This is my life now

A complaint of a blog post!  Well, not really so much a complaint as a negative observation.  Believe me, I am happy to deal with this as opposed to the alternative.


Deal with what?  Last week I had chills quite a few times.  This week it hasn't happened, although we are having record high temps in the Denver area recently, with temps in the high 80s and more.  The chills also came with some fatigue.  I wasn't sleepy, I just wasn't bursting with energy as I have been for a few months. 


These were two of my biggest presenting symptoms.


As you can imagine, I wasn't thrilled.  In fact, one morning I almost cracked with worry over it.  I got dressed for work, but kept thinking about it all morning and finally sat down on the bed and had myself a little moment.  This is my life now.  I've heard to expect this from numerous survivors.  One of the local Livestrong guys compared it to a Great White song - "Once bitten, twice shy."  He noted that 4 years later he still freaks out over every cough.  So, every time I get a cold, or my allergy symptoms flare up, or I get a sinus infection, I'll probably worry, for good and for bad.


In the meantime, I've scheduled my first follow-up oncology appointment for next month.  I have orders for my chest x-ray (again), and some labs.  I haven't done either yet.  I'll probably wait as long as possible to do them.  I'm not looking forward to the appointment, and I want to enjoy myself as much as possible until then.  Chances are that everything will be just fine and I feel pretty confident that this will be the case.  Still,  I see no sense in worrying needlessly until then, so, I try not to think about it.  As you can imagine, that is nearly impossible.  I'll stress yet again, it beats the alternative.

2010 St. Jude Campaign

Today is another "stolen" or plagiarized blog - this one from a buddy of mine.  I suspect he won't mind.  Tomorrow, Monday September 27, is a big day at Chili's.

It’s time to grab the crayons and express yourself while supporting the fight against childhood cancer and other catastrophic diseases.

The seventh annual Create-A-Pepper to Fight Childhood Cancer campaign begins this week at more than 1,500 Chili's® Grill & Bar locations across the country and in Puerto Rico. During the month-long campaign, which coincides with National Childhood Cancer Awareness Month, guests at Chili's locations can contribute to the lifesaving work of St. Jude Children's Research Hospital in a variety of ways:

    * Make a donation to St. Jude and receive a Create-A-Pepper chili pepper coloring sheet. The decorated sheets are displayed in participating restaurants throughout September.

    * Use a mobile phone to text HOPE to 90999 to make a $5 donation (Visit www.createapepper.com for more details)

    * Purchase a Create-A-Pepper customizable T-shirt or key.

    * Buy a packet of Create-A-Pepper wrist bands. The flexible rubber bracelets are in the shape of a chili pepper.

    * Dine at Chili's on The Big Day - Monday, September 27. On that day, Chili’s will donate all profits from participating restaurant sales to St. Jude.

    * Go to www.createapepper.com to make an online donation or to create a pepper to post to your Facebook wall to show your support for St. Jude.

    * Become a fan and donate on Facebook through the specialized Create-A-Pepper tab on Chili's Facebook page or create your own e-card at www.createapepper.com to e-mail friends and family.

"Each year since the 2003 inception of the Create-A-Pepper campaign, Chili's team members search for new ways to raise awareness and funds for St. Jude," said Wyman Roberts, president of Chili's Grill & Bar. "This year, with the addition of digital donation components, we've found yet another unique and interactive way to give back to St. Jude."

"Chili's Create-A-Pepper campaign has raised millions of dollars for childhood cancer research, and we are so thankful to have such generous and passionate partners in our mission," said Richard C. Shadyac Jr., chief executive officer of ALSAC, the fundraising organization of St. Jude. "We are grateful for the amazing support from Chili's guests. Their contributions help St. Jude provide care and find cures for our patients and their families."

Chili's has been a national corporate partner with St. Jude since 2004. Chili's has committed to raise $50 million in 10 years to help fund construction of the Chili's Care Center at St. Jude. This seven-floor, 340,000-square foot facility, which opened in November 2007, combines 21st century imaging and treatment technology with St. Jude's proven approach to medical research of putting patients and scientists in the same building to fast-track the translation of new knowledge into better care for children around the world.

To date, Chili's has raised more than $30 million. Once completed, the donation will be the largest donation from a single partner campaign in St. Jude history.

So show your support for St. Jude by creating your pepper today and help children in the fight against cancer.

For those not familiar with St. Jude or the wonderful work they do, click here.  Link for Chili's is found here.


Tomorrow is also Packers / Bears on Monday Night Football.  So, do as Sarah and I plan:  Chilis's and football to fight cancer.  Color a pepper: maybe Green and Gold for the Packers.    


It's not hard to help.  I think I'll fight cancer tomorrow with a quesadilla explosion salad.

One Frustrating Thing: iPhone 4

Last weekend Sarah and I decided to upgrade her telephone.  She had wanted an iPhone for a while, and we decided to go get one.  


I had to talk her into it, though, since she almost didn't want to bother.  Mistake #1.


She basically wanted one like my own, but mine is old.  We thought we could get a 3Gs for $100, and that was the goal.  (Attention Technophiles:  Neither of us use this for more than random surfing and email checking with the occasional iPod duty.  We don't need the fastest stuff).   So, we got to the Apple Store at Flatirons mall with that goal.  We soon found out that they didn't have any 3Gs.  We hoped to order one, but found out at the store that all orders refer you back to the store.  


OK, iPhone 4 it would be.  Mistake #2.


We purchased the iPhone 4 from a sales guy who had just moved out from Milwaukee.  Perfect right?  Well, no.  Since we were discussing the Brewers and the Packers, we did not discuss phone specs.


It was when we got home and plugged it into Sarah's iMac that we realized it wouldn't work.  We needed OS X version 10.5.  We have 10.4.   Never fear, though, I just happened to have a copy of 10.5 SERVER edition laying around, unopened.


So, I installed 10.5 SERVER.  Mistake #3.


Those of you slicker JVL readers may know that when you install the server software, it completely erases your hard drive.  The feeling I had went past panic.  Oops.  Wow.  This was big.  Luckily, I backed up the computer before doing this.   I should have known a huge fail was impending when I couldn't easily figure out how to configure the server edition.  Meanwhile, Sarah was sitting upstairs, watching TV with the dogs having no idea the destruction I just unleashed on her computer.


I slowly walked up to tell her, and she took the news great.  She knew we had backed up all the pics, but over time, she asked if we lost ____ and ____ and ____.  With "blank space" being any number of different things.  Yeah, we did.


And so, I spent the rest of last Sunday evening re-installing OS X 10.4.   Then I was restoring from backups.  This actually took me most of last week.  I'd say on Sunday and Monday night, I probably got about 2-3 hours of sleep.   (This actually isn't as bad as it sounds.  Since finishing treatment, I don't sleep much.  I sleep very well, but I'm still very much fueled by the excitement of beating cancer so far, and I'm fueled by an unbelievable amount of FRS.)  Mostly the latter those days last week.


The worst was losing emails with flight, hotel, rental car confirmations, but eventually those came back.  In the end, only a minimal amount of stuff was lost.  Relief!


I made a special trip to purchase yet another external hard drive and a REGULAR, non-server edition of OS X 10.6.  Yep, we skipped right past 10.5.  Aren't we trendy?  Well, obviously not.


In the end, though, her phone works, and was hopefully worth all the headache.  We have all her pictures, contacts, bookmarks, and songs on it.  She even has a few apps to play with.  There is probably a lesson in all this, but I feel too ignorant to know what it may be.


I sure hope she enjoys that phone. 

World Lymphoma Awareness Day

Today.  September 15th, although the message isn't so much day dependent, which allowed me to pre-write this post and hit "send" today in seconds even from a phone.   Isn't technology great?  (Sometimes).

Yep, I shamelessly stole that little graphic from the Lymphoma Coalition.  I don't think they'll mind, given their stated goal.  Their website is here:
http://www.lymphomacoalition.org/

And a direct link to "know your nodes" is here: http://www.knowyournodes.org/   Go ahead, take the quiz, click around a bit and learn.  Don't do this for me, do this for you.  Yep, this is a continuation of another post which I stole from my buddy George. 

Caveat:  I don't know the lymphoma coalition.  I'd never seen this website before hearing about this second hand from another cancer organization (Seattle CCA).  But, I did take the quiz and click around some.  You will learn something.  Leukemia & Lymphoma Society is a member of the coalition, however, and I do have "warm fuzzies" for them.

I've actually spent more time reading about cancer now than early on in my treatment.  Early on when I was so sick, I leaned on Sarah to do my research for me.  (Thanks, Sarah!)  Now I cannot get enough info.  One of the things I've learned about Hodgkin's, but other lymphomas as well, is that diagnosis definitely takes time and usually patients go through a couple of other working diagnoses before arriving at lymphoma.  I know this was the case in my little circle of "lymphoma friends."  I was feeling sick by earlier than mid-September last year, but not diagnosed until January.  So, do yourself a favor when you get a chance.  If not 9/15 on "WLAD," then sooner rather than later.

Brunner One Fun Thing: Greatest Anti-cancer / Get well / Stay well gift ever.

I've gotten a handful of gifts in my life that really stick out.  One was an Optimus Prime Transformer, obviously when I was a kid.  Another was the original NES, also as a kid.  When I was in college, my wife (then girlfriend) got me a custom Wisconsin hockey jersey, customized with my last name and the year of our (anticipated) graduation as the number, sewn on in the authentic letters/numbers.  To this day I have no idea where she found that, as I'd looked high and low.


This gift completely blows all those away as the coolest, and most meaningful thing I've ever gotten.  As I mentioned previously, Team Snorting Bull made me a bike.  I don't mean picked one out, I mean made.


If you hang with this crowd, you might get talked into some serious things.  Maybe it is flying completely across the country to participate in a ride that climbs 15,000 feet.  Maybe it is drinking a gallon of milk in an hour or making pants.  Or eating nuclear chicken wings.  Maybe it is riding a cross bike in a mountain bike race.  Or riding the cross bike 100 miles with 13,000 of your closest Texan friends.  Easily the greatest of these, though, is talking one member into actually creating custom steel bicycle frames.


This project had apparently started in planning sometime shortly after my diagnosis.  Erik was already starting to get into creating frames by then, and had obtained a program which took various measurements and gave bike dimensions.  So, he had all of us enter our measurements.  Of course I participated.  The program was cool enough that it spit out a picture of the bike for you, and you could create custom colors and graphics.   Here is a computer graphic of Josh's bike, version 1:

Please click on the picture to enlarge and read the downtube.  At this point, I hadn't yet made my Joshpants, and so I got a pretty good amount of "push" to get this done.  Here I had been spouting off that I could make pants for 3 years, and in months, Erik was already making bikes.  Good thing I finally got those done.


In the meantime, he was taking measurements for the entire team as well as our significant others.  I was excited to someday get myself a Brunner bike.  Someday being in a year or two, so you can imagine my surprise.  You can't you say?  Well, here is a picture.

Wait?  You guys made me this bike?  What?  I just....what? 


The whole thing truly did not compute for many minutes.  How could this possibly happen without me knowing?  Even my wife was in on it and she was very afraid she gave away their secret.  She thought she gave it all away when she sent Erik an email using my email account on accident once.  Since I send these guys multiple emails, there is NO way I'd notice that in my out basket, which I never look at anyway, since I tend to know what emails I sent.  Of course it never seemed weird if she'd email him (or any of these guys), because as I previously noted, they were all extremely supportive and helpful to both of us during my whole treatment ordeal.  To this end, I've exchanged emails with Erik's wife Mary myself, and so none of this would ever flag on my radar.   I'm actually more impressed that the guys could keep all this a secret.

And wow, as you can see, this bicycle is gorgeous.  That had shocked me just as much.  I'd seen Erik's bike that he made himself, and I was very impressed with it, but the fact he made two during his build just surprised me all the way around.  I got to see his bike come together little by little, and it was very interesting to watch.  I was always eager for updates on what he was doing, so this took me by complete surprise.

When I say it didn't compute in my head, I'm not kidding.  Even today I'm finding little details of what made all this happen, and it is honestly very touching.  I'm still surprised.

The attention to detail was extremely thoughtful.  There is not an inch of this bicycle that wasn't planned out and, I'm told, debated about extensively.  This includes color, style, components, everything.  The whole team helped, and apparently Sarah did as well.  During the build, it was actually shipped around the country so that they could all sign the frame.  Wow.  For example, here is Sarah's signature right next to the very appropriate model name.

As close followers of Josh vs. Lymphoma know, I have a policy not to name others in the blog out of respect for privacy.  However, I told these guys I was making an exception, and I have all of their expressed, written consent in the form of signatures on the bicycle.  

As pictured above and here, the bike is outfit with Maxxis Raze tires for cyclocross.  So, the question I was asked was is it a roadbike or is it a cross bike?   Here's what the designer had to say:  

It's a road bike optimized for JB/fatties not a cross bike.

And there you have it.  Here is a great shot by the garage door, since that is how bikes must be photographed by general internet protocol.

For reference, a comparison shot of the pinarellol on which the measurements were based.

Highlights of the build:

Custom steel lugged frame, handmade in Alaska (and MI, apparently)

Ultegra 50/34 crank

Ultegra brifters

XT rear derailleur

DT Swiss hubs / Velocity rims (rated for gigantor)

Ritchey stem/seatpost

Regale saddle

Maxxis Raze cross tires & Jack Brown blue tires

Garmin 705 Edge

Crank Brother Candy pedals

and a Custom handmade Moosey headbadge

I'm told the group called in some serious favors to get some of these things.  And so as of right now, the Pinarellol is relaxing in the basement, likely to get most of the rest of riding season off.

How does it ride?

Very smoothly.  I got to take it for a quick spin on Thursday night in Wichita Falls that did NOT do it justice.   So, yesterday I took it out in "cross mode."  Basically did some gravel trails near home.

In terms of sizing, fit, comfort, really everything - they nailed it.  I know Erik is looking for feedback as he continues to build, but I have absolutely no constructive criticism!  Not one thing, and this isn't just out of appreciation or whatever.  When I was looking to purchase the pinarellol, I was steered away from titanium with the reason being that it would be too "noodley" at my size.  That is absolutely not the case with this steel frame.  It is sized perfectly to me.  I could not have picked out any part better, and truthfully, I'm really thankful they designed the whole thing, because with my color-blindness and complete lack of style, any input I would've had could only have subtracted from it.

Today, I put on the Jack Brown tires and gave it a real road test, climbing lookout mountain, through the country club, on up to Genesee park, before shooting down to Morrison, up through Red Rocks, and over Dino Ridge before heading home.  This was about 40 miles and 4,000 feet of climbing.  I got it up to ~45 mph, and can say it is at least as stable as the pinarellol.  The bike handles better than I do, and the JBs are a pleasure to ride on rough roads.  Sarah came along for the whole ride despite having a migraine headache, and I'm so proud of how she did.  It was a great ride and the feedback I have is that these guys nailed it.  

How in the world do you appropriately thank someone(s) for doing something like this?  There is simply no way I can.  I'm so blown away by the whole thing, I really don't know what to say.  Obviously, I expressed my sincere gratitude to all of them, but there is simply no way to appropriately thank them.   In the meantime, though, Brunner Bikes gets nothing but a top notch recommendation from me.

Hotter'N Hell 100

Team Snorting Bull Photography streaked across the Texas landscape in a big blue and white blur reminiscent of the heyday of the US Postal Service Team.   It was a sight impressive enough to move thousands of other cyclists to their right.  Nobody that wasn't wearing the Bull on their shirt wanted a piece of the "Pain Train."   Well, that was true for a few miles of the ride, anyway.  Let me back up.

When I was first diagnosed with cancer, the obvious concern is life and death.  Once past that, you move into what the next year is going to look like.  When my schedule of chemo and radiation were laid out for me, it initially looked as though radiation was going to interfere with this event.  Let me back up even further.

Team Snorting Bull is basically a group of friends from all over the United States with a common interest in cycling and a much more loose interest in jeep vehicles.  The Hotter'N Hell 100 is like our Super Bowl event.  This century event is somewhat conveniently located in the middle of the United States, making it feasible for us to come from Texas, Colorado, California, North Carolina, New Mexico, and even Alaska, and it has become a tradition for us.

In the meantime, this group of folks has served as a tremendous source of support for me while going through the roller coaster that is Hodgkin's.  As perverted as it sounds, one of my first thoughts in my very first oncology office visit was, "Oh (swear word), now I can't race in Texas with the guys."  Not kidding.  I remember emailing them that night after my bone marrow biopsy stating I was out.  That was it.  Not only was I out, but I was especially out on the Triple Threat.  The Triple Threat combines a mountain bike race and half marathon trail run with the 100 mile ride, to win the greatest award in sport: the coveted triple threat log.  Last year, a handful of us thought it would be a great idea to go for all three.

This team is smarter than I am:  They didn't buy that I was out.  They accepted things, but held out judgment in the hopes that it could come together anyway.  It did, and they were right.  I'm still a little shocked that this came together, but thankful doesn't describe the appreciation I have that it did.

As you can imagine, a weekend like this produces far more stories than can be shared on a blog.  Even more, many of the stories are sort of insider.  It is worth mentioning the weekend's triumphs however.

Thursday night, the team gave me a bike that they made for me.  Expect this to be the next blog post, update: found here.

Friday night was our mountain bike race.  I did it on the HiFi.  Three friends did it on Cyclocross bikes in an attempt to prove a :onebike: theory, and as part of the triple threat.   Unfortunately, some dude took out Charles in a crash a quarter mile in.  Crashed out, he went back.  The two others did complete this mountain bike course on cross bikes.  This video and this website and yet another website do a decent job of giving you a picture of the trail.  Here are three teammates at the starting line.

And here three of us are coming up on the finish line.

All I'll say about this was that other than losing a teammate, it was a fun ride, although we certainly didn't have the best times on the course.  Not even close, in fact.  Saturday was the actual HHH.   What does 13,000 riders look like?

It looks like a never-ending rainbow, to be honest.  It took 44 minutes to clear the start line.  In this picture you can actually spot Team Snorting Bull.  I'm fairly obvious due to the long sleeves I'm wearing for sun protection.  By this point pictured, two of the three triple threat challengers were eliminated, this one due to a timing technicality.  We had but one hope left.

Our team goal is typically 4 hours and 44 minutes.  It seemed unlikely this year due to the Friday night injury, lack of training due to lymphoma, and some fairly bad luck.  By mile 8 we had two flats already.  In that time we got to watch many of those 13,000 folks pass us.   How do you recover from something like this?  By passing one rider at a time.   Sadly, we got to pass many of them several times.  We got caught behind an accident, and 4 of us had to actually walk about a quarter of a mile.  We then got caught behind a train, and had to sit a few minutes.  Later, we were much slower at our planned rest station stop (mile 50).

Hell's Gate closes at 12:30.  If you don't make the gate, you ride 85 miles.  Typically we fly past that with several hours of padding.   This year, we cut it a little closer, but had plenty of time.

The temperature was well into the 90s at Hell's Gate.  Believe it or not, that's lucky for Wichita Falls, TX and this event.  If you've never ridden a century in long sleeves, well, consider yourself lucky.  (Truthfully, it wasn't that bad).

It was around this time that we recalled the "outlaw" mile 95 rest stop.  This one is at a bar offering free beer for riders.   We never stop in an attempt to reach our goal and an attempt to keep our sports nutrition down.  By now we were so far off our goal due to everything that had happened, it seemed logical to stop.  With any luck, we'll never be on such a slow overall pace again.

This is one of my favorite pictures from the weekend.  Team Red Cup!  I have no idea what they were serving, but cold beer never went down so fast.  I really should have had them fill my bottle so I could nurse another one the last 5 miles.

In the end, I was proud to have finished this ride with such minimal training.  I was fueled by some FRS, and some Larabars and Honey Stingers but mostly I was fueled by the excitement that only a cancer survivor who just finished chemo can understand.

That evening was our traditional fajita dinner graciously provided by Greg and his crew from Texas.  Delicious as always, and I look forward to it all year.

Sunday morning was the trail run.  Our last hope was exhausted and sore, but determined.  Actually, I'm not even sure if determined is a strong enough word to describe Erik's efforts.   The evening before, a few of the Texas crew who didn't know him as well had doubts, but Charles, Jon, Greg, and myself knew there was nothing that was going to separate Erik from his trophy.  And he was successful.  This is what a log winner looks like.

I could not have been more pleased with his success.  He came down from Alaska, rode two events on a bike he built himself, and finished the half marathon to win the log.  The card he is holding is a free entry for two events next year, since his story is so remarkable.  In the meantime, Team Snorting Bull is working on getting the Wichita Falls newspaper to take a human-interest submission on this.

Despite all the bad luck, I consider the weekend a success.  Charles was injured worse than he thought, but he managed to squeeze out 100 miles with a few fractures, like our own version of Jens.  Erik got his log.  Greg and Erik proved the :onebike: theory.  Somehow, I found 100 miles within me, and finished as well.  Most of all, we got to hang out together and enjoy.