OFT: Steamboat Wine Fest

This past weekend, we escaped to Steamboat Springs for a weekend away with some friends.  The purpose of the trip was to hit the Steamboat Wine Festival, but also to get away and relax.


We had a terrific weekend.  Our friend Sheri rented a really nice condominium not far from the resort.  We got in late Friday night.  I was disappointed it was dark when we arrived, since I'd never been to Steamboat and wanted to see it.   The drive was beautiful, however, and we got to see much of that.


Saturday morning Sheri and Scott made breakfast and we ate.  Then the four of us went on a bike ride up the Spring Creek Trail.  Barely into the ride, the craziest thing happened:  This bee be-friended Sarah by flying down the back of her shirt, stinging her 3 times there, and getting her neck before she could finally ride away from him, after tossing her helmet and glasses!  She managed to smile anyway.

Sheri and Scott enjoyed themselves as well.

We did find one steep hill.

Only Scott rode up it.   I accidentally dropped my bike as we finished and had to quick scramble to find a bike shop for a part, but then we went back and enjoyed a delicious lunch.  Sheri prepared it, although she said that she'd be willing to try some Josh-recipes, which is a first.   Even the buffalo sauce-flavored tuna quesadillas.


Later that night we met up with some of Scott and Sheri's friends and hit the wine fest.  The wine was great, of course.  They had food there as well, including elk "brats," which were my favorite, although some alcoholic mini-cupcakes (flavored like cherry coke) were a close second.   The other "win" was that Stella Artois was there giving out full beers in fancy Stella glasses.   I don't like to mix, but it was hard to pass on.   What a relaxing day!

Guest blog: Dave writes of "Dave's Ride for Josh"

If this blog were an 80s TV sitcom, this would be "A very special episode of _____."  It is not an 80s show, but this is a very special blog post.  The background to it can be found here.


Last weekend was The Scenic Shore 150 Bike Tour, or "Dave's Ride for Josh."   He texted me both days when he was done, and he made great time considering crowds and conditions, but more importantly, finished safely and strongly.


How did Dave's fundraising efforts go?

As you can see from his pledge page, it exceeded all goals and expectations!  This unbelievably awesome.   I asked Dave to write up a quick summary, and he has, which is here in red:

"On July 24th I participated in the Leukemia & Lymphoma Society's Scenic Shore 150, or as I liked to call it "Dave's Ride for Josh".  Many of you Josh vs. Lymphoma readers donated money for my ride, and thanks to your generosity, I was able to raise $2010 (more than twice my original goal).  Since many of the donations came from readers of this blog, and people I don't even know, Josh was kind enough to let me post a blog entry about the ride. 

First of all a very huge THANK YOU to everyone who donated.  I was overwhelmed by the number of donations from people all over the country.  Since I wasn't able to ride with Josh, I took him (and the bratwurst from Miller Park) with me on my bike in spirit.

The first day started out cloudy and rainy and since Milwaukee was hit with some flooding the day before, it was a little concerning.  I wore the snorting bull jersey that Josh sent me for the first day's ride.  One Fun Thing indeed.  As the day went on the sun and humidity showed up making things a little more difficult.  There was plenty of "scenis shore" to see, along with some farm land.  We finished the first day a little under 5 hours averaging 15 miles an hour, not bad for my first distance ride.

Day two started out with tired legs and sore butts, but once we got going, I was surprised by how much energy I had.  That was until the hills came.  Day two had a lot more hills than the first day, so that slowed down our pace.  I rode in my Scenic Shore Sprinter jersey that I was awarded for raising over $1000.  After riding through some head winds and some hills we finished in about 5 and a half hours.  I took Josh (and the bratwurst) with me all the way to the finish line.  Hopefully next year, I can take the real Josh with me.

Thanks again to everyone who donated, and to everyone who encouraged me through my training and the ride itself.    -Dave"

The whole thing is so touching and impressive, I'm not even sure what to say.  Thank you (both to Dave and to everyone who donated) doesn't seem sufficient, but it is the best I can do.  I can also leave a few other pictures he sent Sarah and I, and say that Sarah is already making plans for us to hopefully join this event next year.

One Important / Interesting Thing

It has been almost 3 weeks since I was told my PET scan was clean, a "complete response," and that I am in remission.  Since that time I have been on a tear to do fun things.   


One of the thoughts that has commanded much of my attention is the idea that I have been given a tremendous gift.  This doesn't take much thought at all, but what does occupy time is trying to decide what to do with this gift.  I think I have alluded to this struggle a little bit before on this blog.  Do I live for fun?  Should I make many little changes or a big change in life?   Is this simply the end of a chemistry experiment gone initially bad, and then improved with chemotherapy?   


This weekend I was reminded that what I am wrestling with is commonly called, in cancer circles, the "Obligation of the Cured."   Cured is an interesting word.  It is not one that I can apply to myself just yet, or rather, not one that an oncologist would apply to me.  There are various milestones in time that must be achieved first.   Still, when I got this reminder, it very much hit home that this is exactly what I've been thinking about.   I don't think I'll ever be held accountable, and yet I cannot imagine ever explaining to anyone how or why I may have ignored this.   This is especially serious considering the support and advice I was given from a fellow survivor that I have blogged about previously.


What is the best way to "pay this forward?"   I certainly do not have an answer yet.  I definitely appreciate, as just mentioned, all the direct support I've been given, and not just by Hoss but by many others, many who haven't had cancer.  As a result, I've been on the lookout for ideas.


I've spent some time thinking about Imerman's Angels, the Leukemia and Lymphoma Society, and Livestrong.  I've mentioned the latter two as two particular organizations that have directly helped me.


This weekend Sarah and I attended a Livestrong University workshop.   I was hesitant to go, and I think Sarah even more so.  You can read what the plan for these are on that link, but I've copied it here:

LIVESTRONG Action Workshops will focus on providing the foundational skills needed for advocates to lead the fight against cancer in their communities. Advocates will learn how to meaningfully communicate with decision makers, gain the attention of the local media and utilize their stories to put a “human face” on the cancer crisis. Workshops are dynamic and interactive, giving advocates the opportunity to build new relationships and utilize their skills to immediately affect change at a local, state, national and global level.

I wasn't sure if this is what I wanted to do, but I wanted to explore the idea.  It seemed like a lucky coincidence that I found out about this workshop two days prior to it occurring.


The workshop was more powerful than I expected.  We worked on sharing our story.  Mine is well outlined and documented here on this blog, and yet it wasn't easy putting it into a 2-4 minute presentation with a goal of convincing someone to do something.  There were many stories, and all were great.  They highlighted a variety of backgrounds and experiences.  


One of the key things I realized about myself while sharing my story was how uninvolved I was prior to this.  I had thought about trying to help one of these organizations, but beyond financially, I never have.  I don't know why.  I guess I didn't know where, or how, or if I even should if I haven't been directly affected.  (I should have.)  Given the number of people I've known with cancer this seems odd, but I didn't have it myself.  Truthfully, it also partly seemed like an exclusive club you didn't want to be in.  Would I be suspect for trying to join without the "proper credentials?"   I can now assure each and every reader having since obtained the "proper credentials" - NO one will be suspect of motives.  


I called this "One Important / Interesting Thing."  It actually also qualifies as "One Fun Thing" as well, but it seems so much more important than a trip to the aquarium or monster truck show.


In short, we met some very great people, including our moderator from Livestrong in Austin.  We discovered there are many ways to get involved, and I really hope to do more as I can and as I become more connected.   So, look for more on that front over time.  In the meantime, if anyone is looking for a jumping off point to get involved themselves, I have some great links above......

Radiation seems unlikely

Yesterday would've been my first "dose" of radiation.  However, my radiation oncologist cancelled all my appointments.   He called two weeks ago wanting to tell me my PET scan was clean.

I asked what that meant.  It was the third phone call in 2 days to tell me as much, but I wasn't sure what it meant.  Or rather, I thought I did, but wanted to hear it.   What medical oncology called "remission," he called a "Complete Response."   We had expected a bunch of scar tissue from so much tissue, but I had very, very little.  This was completely unexpected after much discussion with oncology and even my surgeon.

The radiation oncologist told me he wanted to make an appointment to sit down and talk to Sarah and I soon, which was last week.   When his schedulers called to verify the appointment, I found out he had cancelled my other simulation and all my radiation.   Clearly he was serious.

We talked last week for about an hour in his office.  He had initially planned on the radiation (obviously) and laid out all the trials for us.  It wasn't a SURE thing at that point, but pretty sure.  The data gave just enough wiggle room that if I absolutely didn't want it, I could probably have gotten out of it with him, but not my medical oncologist.

This time was different.  Now he felt he would NOT radiate.  The whole hang-up was that I don't *truly* have bulky disease after all. The reports in my chart say "bulky" but the unfortunate thing is that actually means something specific in radiation oncology, and they should have just said "large."  The criteria in medical oncology was 6cm (mine was 7cm), but his criteria per the studies was 10cm or 33% of my chest (this was about 14%).  Moreover, although my tumor was huge, it was several huge lymph nodes grown together, which he felt changed the picture as well.

In any case, he would do either thing I wanted, treat or not, but if it were his decision on himself, he would not do it. So, I won't. The risks / benefit ratio is just high in his opinion.

Basically, I've got a ~15% chance (or less, since not really bulky) of relapse. If I got radiation, I'd decrease it to maybe 8-10%, but, I had cancer below the diaphragm, and it could recur anywhere. Usually it is the chest, but potentially anywhere. So, radiation marginally decreases the risk of relapse.

However, the risk of radiation on solid organs (think heart, lungs, esophagus) is about 1% per year. So, basically I have to live 15 more years for that risk to tip over towards not doing radiation. I sure hope I can get 15 more years. 

Furthermore, cancer of the lung or esophagus is serious business.  My chance at a cure for a relapsed lymphoma (or leukemia) is better than solid organ, and during the simulation, he decided he would be hitting a big field with a lot of lung.  This made him nervous.  This combined with the bleomycin (the drug that causes lung problems) wasn't the best situation.

So, am I happy?  Well, sort of.  A very tempered yes.  There are big risks on both sides, so this isn't a fun decision to make.  It is why I deferred to the radiation oncologist.

However, I am comfortable with it, since I think it is the best we know right now.  I feel as though this physician did a lot of work and investigating on my behalf and made a lot of phone calls for other opinions.  Either way could go very right, or very wrong.   So, I'm not really "happy" per se, but I'm comfortable.

On the other hand, in terms of instant gratification, I am a little excited.  Basically, I'm done until follow-up in October.  Until then, I'm trying to cram as much fun in as I can.

One Fun Thing: Camping

Cabin-ing, actually.  This past weekend we took the dogs to Dory Hill Campground.  I'd never stayed here before, but I'd biked past it many times, and many times I'd stop in for gatorade.


The dogs seemed to enjoy the time away.  This was Lucy's first trip.   Both dogs most enjoyed getting absolutely filthy in the dirt.

We did some hiking, but mostly just relaxing.  Cooked some camp-out food, had some coffee, and caught up on some reading.  Pharmacy stuff in my case.

We figured the dogs would be really tired.  They were, but not as much as you'd think when we got home.  Still, they slept most of the way.

We got home in time to catch up on some of the Tour, and then I even got a mountain bike ride in that evening.   Not a bad weekend at all.

One Fun Thing: Riding bikes with Lance Armstrong

A good friend of ours sent us this info regarding an event during a weekend we were already planning on spending in the area.

Needless to say, I was pretty interested.   The event details can be found here at Ride 4 Yellow.  So, what about the ride?   The description, from the website, is as follows:

The Divide Trail is an epic Rocky Mountain single track ride following the Continental Divide that will be supported with aid stations and support on course. 

This is a non-competitive ride and the trail is suitable for a wide range of abilities. However, this ride is not recommended for inexperienced mountain bikers. The Divide trail is a challenging but not extreme single track trail. At just under 26 miles, riders will experience moderate to difficult terrain. The ride ends with a fun descent from the top of the Steamboat ski mountain.

If you’ve ever wanted to do this ride now is the time. We’ll have an aid station at Long Lake (approx. 1/2 way) plus support on the course.

As I've posted, I have recently purchased a new mountain bike.  I've been trying to hit the trails pretty hard, and I've had some friends act as great mentors in showing me the ropes.  Still, "challenging" and "moderate to difficult terrain" and "not for inexperienced mountain bikers" are fairly clear warnings.  Despite this, it is not an opportunity I wanted to miss, for obvious reasons.


Moreover, I've been wanting to do this race next year, or possibly even this one.  (The latter would be what we call a "stretch goal" at work).  So a 26 mile ride seems like a great start, and certainly no slouch of a mountain bike ride.  This past weekend's Fat Tire Classic was a great starting point as a test of theory.


What does the course look like?   The photos look gorgeous.  The profile, however, looks a bit scary.  

I'm liking everything up to about mile 16.  Beyond that is what makes me most nervous.  I am terrified of the downhill.   So, what we've established is that we have a challenging course, a big downhill, and a cancer survivor who should be right at the end of his radiation treatment.   Sounds like a recipe for success, right? 


Absolutely no doubt about it, this will be a challenge for me.  Another mountain to climb, so to speak, although more literal in this case than the ones I've had in my lymphoma battle.  Given the circumstances, I'll be doing everything in my power to channel my best Jens Voight.  (Shut up legs!!!)




What else?   Lance's mom will be the keynote speaker at the event celebration.   All of the proceeds from the event will go towards fighting cancer or benefitting those fighting:  Half will go to Livestrong and the other half will go to the LOCAL community of Steamboat Springs for cancer related services. 


In order to do the ride with Lance, you need to raise $500.   I am not soliciting donations.  I've already donated the entire amount myself.  I'm extremely touched and pleased by everyone's generosity towards the Leukemia and Lymphoma society as so many have donated to Dave's Ride for Josh, such that he has achieved 150% of his goal in fundraising.   


However, Livestrong and a local cancer project is still obviously a great cause.  The former is as near and dear to me as LLS, and so if anyone is compelled to give to fight cancer (or seeking to decrease their tax burden), that link is here.  


It is extremely likely I won't even see Lance Armstrong himself.  Besides having a lot of handlers, he'll be at the front, and I'll be off the back immediately.  Despite this, I'm very excited as I anticipate this to be a very cool experience, and certainly one very fun thing.

One Fun Thing: Fat Tire Classic

In an attempt to balance not boring-up this blog as well as still indicating that I am, in fact, doing fun things and living my reclaimed life, I'll try to concisely post about a few fun things as I can.


This past weekend was the Fat Tire Classic up in Winter Park, Colorado. 

We went up Friday night and got there around 8pm.  By the time we were checked in and got the dogs and bikes into the hotel it was almost 9pm, but we did manage to order a couple of salads from the restaurant and bar in the hotel.


Our hotel was great.  We stayed at the Winter Park Mountain Lodge.  

This was a great hotel because (as noted) they let you bring your bikes and dogs into the room, and it was relatively inexpensive, and they had a decent bar / restaurant, although apparently their microbrews left a little to be desired.

The Fat Tire Classic was fun.  We went with some friends from work, and rode the trails on Saturday, seen here.

I'm told we rode around 33 miles with just over 3000 feet of climbing after being out for just about 4.5 hours or so, including stops at the aid stations and some sight seeing and a mechanical.  That was easily the longest I've been in the saddle this year, and it felt great but at the end I was quite spent.  While I did that, Sarah took Lucy on a nice long hike and got her into the stream a few times.

The next day, two friends did some downhill runs, but I was pretty tired and could hardly bike at all.  So, I did a little ride into town with Sarah and back.   We got back into Denver with plenty of time to watch the day's Tour de France stage.

The weekend ended with us having dinner with a friend.   All in all a great weekend.