eRock start!

The eRock race is on! Here's a picture of the start:

Carlin went off first and did a fast 33 minutes and change. Gary has just finished, pushing a 32:35. Amanda's out on the course, followed by Ed, Steve, Scott, Tony and I. We've got pasta cooked and people are fueling up - some folks are eating dinner before they ride, some after.

Here's Gary right after his first lap:

Check back in a couple of hours for some after hour shots! We had a bit of rain around 6:30 but no it's clearing up. Hopefully a nice night of riding awaits!

eRock 2012 - pre race camp setup

Howdy, gang! This weekend I thought I would change gears a bit and post a few things about the 24 hour of eRock we're doing this weekend. We've got 8 of us this year - me, Tony, Carlin, Gary, Steve, Scott, Ed and Amanda. I'll be posting photos and maybe even lap times through the nite and tomorrow so although boring to most of you, it'll be a fun thing I can do to celebrate being active and being done with chemo. Yeah!

Here's a couple of pics as our campsite came together:

There are about 100 teams in the race; a combination of solo riders (crazy!), 2, 4 and 8 person teams. It's really, really fun to get a few hundred cyclists together and spend 24 hours racing around an 8 mile loop! I know it sounds either boring or crazy to spend a night and a day doing this, but I really enjoy it. Our team is a somewhat serious rec team. We're in no danger of winning our division but everyone works hard on their laps but are also very supportive of whatever speed people go at. Which is a good thing, since I'm pretty sure I'll be the slowest person in the group this year. My last dose of chemo was 26 days ago so I'm still a long way from being completely normal in terms of blood chemisty. I'd say I'm at about 65-70% of the speed I was capable of in 2009. No one's sure how much function I'll get back so it's pretty much a wait and see game. So for now, I'm working hard, enjoying being able to be active and trying to lead a healthy lifestyle. Good sleep, good food, exercise regularly, don't drink *too* much alcohol,, manage work stress, etc.

Ok, that's it for now! The race officially starts at 6:30 mountain time. I'll post pictures of the start - they have a running start which is a hoot to see. 80-100 cyclists clomping down the dirt road in their bike cleats and then off on their bike. Stay tuned for more posts as the evening progresses!

Taking the Next Step - by Susan

Over the past two years George and I have been on a roller coaster ride battling his Hodgkins lymphoma diagnosis.   At this point, George only has one more SGN-35 chemo treatment and then he is done with the clinical trial.  He is basically healthy and happy, although his red blood count is still too low.  We are expecting that to go up as soon as he is off the SGN-35.    Right now we are enjoying every moment of our lives, so thankful that George is in a good place. 

Like so many people who go through this experience, it has made us re-evaluate what is important in our lives.  I had been thinking about transitioning to a new career for the past several years, but my dreams of quitting my job in IT were thwarted by George’s diagnosis.  Now that things are looking up for him, it seemed like a good time for me look for something new.   I was worried about our financial situation, but in reviewing our budget we realized that we had saved up enough money for retirement, we had finished putting all four of our kids through college, and George’s income was sufficient to support us until we both officially retire.    So, with George’s full support (actually, George’s PUSH), I quite my management job at a software company to follow my dreams.

 I have spent 30 years in the IT business, being a programmer, systems analyst, project manager, and finally a manager, and I am ready for something new.    I originally went into IT because I wanted to try a non-traditional field for women, and I wanted to make enough money to support myself and my family.   I also found that I had a knack for the type of analytical, creative problem solving work that goes with programming (not everybody does, as I found out in my first computer programming class).    I also found that I liked management when I got into it – but the part I really liked was in helping empower others and leading teams.   However, getting into management led me to short-change my individual creativity, that fun-loving part of myself that somehow got pushed into a box over all those years. 

So, thanks to the support of my wonderful George, I have quit my IT job and I am now unemployed and looking at my next ventures.   For starters, I will be working to support the cancer survivor community through LIVESTRONG.  George and I are both active with the Colorado Cycling Team Benefiting LIVESTRONG.  To find out more about this group, you can go to www.coloradocyclingteam.org.    The other thing I’m planning to do is to work on my writing.  I have always written through all the years – journals, poetry, short stories, technical writing, and (I hesitate to admit), a half-finished novel.     I never had time to do as much as I wanted to because of all the time I spent at my job (plus all of my athletic, musical, and social activities, of course!)

I have had several conversations with my son Ross and his fiancée Maruja about the creative life.  Both of them are pursuing music careers in the Netherlands, and it is a grueling, demanding job.  The question is, how do you nurture the creative side, which requires imagination and a sense of play, with all the technical skill and sheer hard work that is needed to get your work out there in the public eye?      Maruja sent me a book to help get things going, called The Fire Starter Sessions by Danielle Laporte.    I have just started it, but it looks like a great guidebook to find your inner fire and creativity.  

French sociologist Emile Durkheim coined the term “deformation professionelle” to describe a person’s transformation due to their profession.  This could be mental or physical, and can go so far as to affect a person’s entire world view.   Think about our stereotypes of accountants, lawyers, professional athletes, rock stars, etc.   This phrase has even been used in a negative way to describe what happened to average bureaucrats in Nazi Germany to account for their war crimes.  This is how I felt in the corporate world.  Now, if you know any IT people in Boulder county, you will say that the “deformation” is not that onerous – most IT people dress in a pretty relaxed fashion,  say what they think, and even bring their dogs to work.  However, just being in the corporate world, and especially being in management, requires that you “walk the talk” to use a management-101 phrase that actually makes me physically ill. For example, I could not wear loose, flowing, sparkly dresses and be taken seriously.    Without going into too much detail, I feel now that I was like one of those stretchable dolls that was pushed into a spherical plastic container, and now the container has been removed and I’m gradually expanding back out into my natural shape, complete with legs, arms, head, and all kinds of bumps.    I’m sure this will take some time to figure out where I end up, but I am SO THRILLED about beginning this new phase.    As Mary Oliver wrote in her peom, “The Journey”,

One day you finally knew

What you had to do, and began.

the joys of a bike dawdle

Most of my posts over the last two years have focused on my cancer care but today I thought I would just post a little note that has nothing to do (directly) with my cancer survivor-ship. Today I want to talk about the joys of dawdling on your bike.

Growing up I was on my bike - a lot. When I was about 8 and wanted a new bike, I "accidentally" left my bike neatly hidden behind one of the cars so that my dad backed up over it, thereby opening up the door to a new bike purchase. As a parent, I now realize what a horrible moment it must have been for my dad when he heard the crunch and wondered if he had just run over his son along with his bike. To his credit, he was pretty civil about the whole thing. I was just excited about having the perfect excuse to get a new bike! I don't think of myself as being very Machiavellian but looking back on that episode it seems pretty diabolical. Anyway, back to the main subject. Growing up, I spent a lot of time on my bike. I would cruise around the neighborhood and  the rides were typically very short - a mile or perhaps two. As I got older and had various activities outside of the immediate neighborhood I would ride my bike to them and started to get a sense for biking as its own activity, not as simply transportation. I never entered a bike race growing up as there was no organized youth cycling program in my town when I was a kid but I did enjoy riding hard on the bike. After college I started getting back into biking, mostly as part of a being a triathlete. And with that transition, bike riding started to get a lot more structured. I got a bike computer and starting recording distance, average speed, perceived intensity, etc. That was about 30 years ago and to this day I still track lots of information about my bike rides. But one of the things that I've lost a bit is the joy and spontaneity of just putzing around on my bike. As with many other things in my life, Susan came to my rescue on this and has coached me to - every once in a while - just get on the bike and fart around. Don't worry about the distance, don't worry about how hard you're working. Saturday was just such a day. The weather was gorgeous and there were a ton of people outside, walking, running, biking, gardening, etc. Susan and I got on the bikes and wandered over east of where we live. No big hills, not much traffic, nothing special to see. We just dawdled. Took a break halfway through the ride for a little snack and ended up being on the bikes for a couple of hours. It was just a really nice bike dawdle. It was definitely a zone-1 (zone-0?) ride but I've learned (or re-learned) that it's OK to do that sort of ride once in a while. At the end of the day, if every time you get on your bike it's a death march, you're probably not going to enjoy riding your bike at some point. And that would be A Bad Thing.

So the lesson for the day is to to make sure to remember that bike-dawdling is an essential part of the whole bike experience. Once in a while make a serious commitment to dawdle on your bike. Whether you're in a group or riding solo, embrace the dawdle and I think you'll find yourself smiling throughout the entire ride!

A great Valentine's Day

Last Tuesday was a pretty special Valentine's Day for me. The first big good news was that I got my CT results and everything looked normal. It was 2 Valentine Days ago when I had some suspicious bumps in my neck. I didn't tell Susan about them because I didn't want to spoil the day. But inside I was worried that there might be some trouble brewing in my neck. A couple of days later I went to the doctor and started down this fun trail called living with cancer. So to be demonstrably more healthy in 2012 than 2010 was certainly a great part of the day.

The other really awesome part of the day was getting some original art as a present from Susan. Every once in a while - usually to commemorate some milestone in our lives - Susan will write some original prose or poetry. I can do nothing like that and to me it's always an amazing gift when she creates one of these pieces. Here is the gift I received this Valentine's Day. Read this and you can see what a lucky guy I am to have such love in my life and have it expressed so beautifully.

The Perfect Man

I tried to make the perfect man

of clay and hair and cloth -

I pulled his limbs

long and strong, 

smoothed his head 

into a faultless shape to lock out all unhappiness.

I lit him with a match.

His eyes kindled,

And he listened, really listened.

He always got his proper nouns right

He had no bumps and bruises,

Didn't need to figure anything out

or fight because

he had everything he needed.

But he had a problem - 

He couldn't say anything that I hadn't taught him,

He didn't know anything that I didn't know.

His heart had not been cracked

By terrifying fate - 

he had no grace or courage,

having endured no hardships.

He wasn't you.

I shelved my statue

and forgot about him,

to seize our love, in all its craziness.

I exploded with

wild happiness, grief,

broken skin

unbridled laughter

unexpected white truffles

the cat's paws in first snow

the scent of an unimagined shore.

to George with love from Susan

Valentine's Day, 2012

2 year survivor!

Well, I'm two years old today. IOW, I'm a two year cancer survivor today. Looking back at my early posts brings home the fact that it's been a hell of a ride. I like the concept of being two years old because in many ways, that's where I feel like I am with all this cancer stuff. Like most 2 year olds, I'm  pretty well behaved. But I get cranky at times or suddenly get exhausted and want a good nap. Sometimes I just throw a total shit fit (see my previous post about waiting to get my CT results).

I read stories about cancer survivors and they sound like they've received some great philosophical insight, have been given some great gift that have changed their lives for the better. Well, I wish I had their kind of cancer. And at some level, I think that anyone that says that is totally full of shit and is putting on some lame ass marketing program so the rest of the world can see how cool they've become. I don't believe it, to be honest with you. For me, the whole experience has been one I would never, ever wish on another person and I'd be extremely happy to have never had. Oh, sure, I've learned some things about the world that maybe I didn't really understand before. Here's the list of things I've learned:

• Love is important. Without it, life is pretty shitty. With it, life is pretty awesome.
• Family is important. Probably a repeat of the previous item but worth its own bullet point. As rough as things have been over the last two years, without family it would have been way worse.
• I'm tough. Stubborn, courageous, tenacious as well. And oh yeah. I've been plenty scared, angry, worried, anxious, depressed and beaten down over the last two years.
• I'm sad that my body has been damaged by this process. I've always liked my body and it's enabled me to do a bunch of fun things in the world. Here is the list of things that have gone wrong with my plumbing:
• blood clot in my left arm, probably from the power port I had inserted into my left pectoral area in the spring of 2010. But perhaps from all the blood draws I had in my left arm in 2010. I can't swim more than about 200 yards of freestyle without my left hand turning purple from lack of blood return flow in my left arm.
• Fractured T7 vertebrae in my back from low bone density caused by prednisone.
• Lung damage from bleomycin toxicity
• Peripheral neuropathy in my toes
• Various skin sores, rashes
• Scar tissue in my left neck area from the cancer in my lymph nodes
• Reduce aerobic capacity caused by the anemia which in turn is being caused by the SGN-35 chemo I'm getting.
• Have lost my taste for most fish, can't eat red meat, don't like cheese any more, beer and alcohol are less fun
• I'm either a very spiritually advanced person or a complete rookie. I've though a lot about dying and what's next. I believe there is something next but I don't have a strong idea of what it's like. I'm scared that what's next might mean being separated from my family forever. That would suck. But the whole thought exercise of dying hasn't driven me towards any need for more organized religion or some great epiphany about how I should live my life. Maybe those insights are still to come.
• Life is good. Like, really good. And precious, Oh, so precious.
• I am not ready to die. Not by a long shot. Maybe when I'm 85 and my body is really broken down I'll be ready for the next thing. But not now.
• I can understand how people give up on living. I think if your body is f__ked up enough, for long enough, and you hurt for long enough, I can see how you'd be ready to let go of this existence and move on to the next thing, whatever that might be. Especially if people that you really love (aka your spouse) has already moved on. My mom lived for 13 years after my dad died and she thought about him every day and missed him every day. I get that. At some point, I think my mom was happy to die because she really believed that she would get to be back with my dad. I hope that's true and that they are in some existence right now, surf fishing together. Minus the part where my mom hooks my dad in the nose with a big ass lure because of an errant cast. True story. Or perhaps she's busy hooking a seagull with an errant cast. Another true story. And my dad gets to capture the seagull, wrap it in a jacket (hard to do, but important when the seagull is struggling) and uses his needle nose pliers to cut the barb off the hook. This is a reminder that you should always, always have your multi-tool with you. In this life or any other existence you might be in.
• Having people die that you know is bad. Really bad. The closer they are to you, the worse it is. But really, it doesn't take much for you to feel close enough to someone that when they die, it feels like someone has punched you in your private parts, puked down your shirt and thrown broken glass into your eyes. Yeah, it's that bad. I've known a couple of people with cancer that have died. And perhaps a 3rd one that I've lost track of. Which begs the question, what is the social etiquette of trying to track someone down just so you can find out if they're dead (yet)? I haven't figured that one out yet so I haven't tried to figure out what's going on with Reuben. But I think about him a lot and hope he's OK and wonder if I'm a chicken shit because I'm not tracking him down or just being respectful of his family's privacy. More the former than the latter, I think.
• I like to exercise. I need to exercise. When I can't exercise, life is harder. And exercise can just mean walking down the hallway a few times. Movement is fundamental to how I live. 
• Compassion. Feel like I've maybe got some more of it for people that have cancer. Still need to work on this. Feel less compassionate towards people that worry about problems that don't seem very important to me.

So have I been changed by the process? Absolutely. For the better? Physically, definitely not. Emotionally? Probably a toss up. Maybe I've got some more wisdom but I've also had a lot more sadness and loss.

But the big, big lesson that I'm enjoying today is that I'm still here. I love my family, I have a great circle of friends, my health seems to be improving and I can visualize a reality in which I'm here in this existence for many years. I still have many things to do in this world and I'm not anywhere near ready to go on. So today I'm happy. Happy to be here, happy to be more or less healthy, happy to be typing this note to you, whenever you read it.

Sometimes I feel like closing with some advice, or some pithy comment. Not tonight. I'll just end here and tell you that I've got another blog coming tomorrow that is a great example of some of the great, wonderful things I have in my life. Bonsoir!

Another clean CT scan. Joy, happiness, relief

Had another cat scan last Thursday. As always, in the days leading up to the scan I become more and more anxious. Because of the type of Hodgkins I had (nodular sclerosing) it's pretty common to have scar tissue in the nodes affected by the cancer and the follow on chemotherapy. I also had an excisional biopsy in that area to diagnose the disease (look at this for the result of that little adventure) which probably caused some scaring. Because of all of this, the left side of my neck still feels a little funky compared to the right side of my neck. As the time for the next CT scan draws near, I start checking my  neck more and more frequently and any little twinges quickly lead me down a path of fear, uncertainty, anger, sadness and general emotional chaos that I have some more malignant cells growing in the war zone that is my left neck. I do lots of visualizations that my cells are happy, healthy and normal. But by the time of the scan, I'm basically a basket case, thinking through how great it will be to get good news and how I will deal with bad news. Good news = happiness, joy, relief, another 3 months of normal living. Bad news = a PET scan (to confirm hypermetabolic activity indicating tumor growth), followed probably by another stem cell transplant. This probably means another leave of absence from work and 3 months of tests, massive chemotherapy, stem cell transplant (basically a transfusion of your own blood), more transfusions for platelets and red blood, nausea, constipation, fatigue, hair loss, possible pulmonary complications and another step down the road of not living so long. In a nutshell, this is stuff that You Don't Want To Do.

As I lay down on the table prepping for the CT scan, I send one final message out to the universe. If you've ever heard of foxhole conversions, this is what happens to me. In the space of about 30 seconds I think about joining every possible religion on the planet and broadcast a heartfelt message to any deities (either at the cellular level, the spiritual level, the n-brane cosmic level, wherever and whenever I can get anyone to listen) that I would really, really, REALLY like to have a clean scan. The actual scan itself is pretty uneventful - it takes about 10 minutes and unlike an MRI machine, the CT machine uses a torus that's about 2 1/2 feet wide inside, so there's no feeling of claustrophobia. After a few minutes of lying there, you're all done.

And now the waiting game starts. The radiologist will read and interpret the scan in about 2 hours. So having had the scan at 11:00 in the morning, it's reasonable to think that by late in the afternoon both the radiologist and the oncologist will have done their thing and I'll get some news. Now the one thing I've learned in these situations is that you don't want to be popular and important. Similar to being popular and important in the ER, being popular and important to your oncologist usually means that Bad Shit Is Happening (To You). So as Thursday afternoon and evening goes by, I try to convince myself that not getting a call probably means good news. And then Friday morning goes by. And then Friday afternoon. Part of me just wants to call the goddamn fucking oncologist and say "WTF!!!!" Don't you know that I am a nervous wreck and that this waiting is turning me inside out. Have you no sense of compassion? Tell me WTF is going on. Or I will drive by your house and smash in all the windows of every piece of your property I can lay my hands on." Well, I didn't really think that but you get the idea. What I did think was that there are people in the same program I'm in that are way more messed up than I am and that probably (PROBABLY) everything is fine and I should just chill out. So I wait all weekend and do a pretty good job of not getting too spun up about the uncertainty. So Monday morning I finally crack and send a little note to my oncologist saying "hey, just btw, how did my scan turn out?" Cuz, you know, I am an uber-cool and with-it guy and I am totally not rocked by the fact that these test results will have a major impact on you, know, like THE REST OF MY LIFE. So you know, if you could just FUCKING LET ME KNOW WHAT THE FUCK THE TEST RESULTS ARE, that would be really, really nice. And 10 minutes later - bing! I see e-mail from my oncologist. So, with my junk pulled up into my throat, I click the link to read the message. And she says - "I'm not working today, I'll look at your results tomorrow." And I'm immediately relieved that at least it's not bad news. And then I think, wtf, wtf, WTF, WTF!!! Now I have to wait until tomorrow morning? Crap, shit, fuck, damnit to hell. I just want to know. But I sort of don't want to know. Because knowing could be really good. Or it could be really bad. So not knowing is sort of better than knowing because you can sort of trick yourself into feeling ok. But that trick doesn't really last long and then you're just back to being anxious and nervous.

So - sigh. Another night of waiting. I meditate before going to sleep and work to get centered and convince myself that whatever happens, it's really not the end of the world. There are lots of treatments still available to me and because I can't feel any giant lymph nodes, if there is some malignancy there, it's not super advanced. Surprisingly, I sleep pretty well  Monday night. Tuesday I am on campus doing some job recruiting and am just waiting for the damn phone to ring so I can get this chain off my neck. And finally, about 1:30 I get the call. And in 15 seconds I know that everything is good. No signs of abnormal structural changes, everything looks fine. And the world is suddenly a beautiful, happy, awesome place to be. Relief, joy, giddy happiness, exultation. And also emotional exhaustion. Worrying is really hard work! It feels like I just ran a marathon. And of course, you get off the phone and the world continues on like nothing has happened. Business meetings continue, people still type away at their keyboards and chat on the phone. Part of me wants to run down the halls at work screaming that I've just been given another 3 months of healthy living. But another part of me just wants to be a normal person at work. Of course, I can sit in a meeting, read my e-mail, do some work in my office and then drive home to dinner. I am a normal, healthy person. I can do normal stuff. I am not about to go through six months of invasive medical procedures that may or may not save my life. Nope, not me. I'm just an average guy with no life threatening illness sitting in the wings waiting to rip everything I hold dear away from me and plunge me into an abyss of - what? Nope, don't have to worry about that because That Is Not ME. Or at least not me for another 3 months.

So as crazy as these last few paragraphs sound, I believe that I'm relatively calm compared to some people in this situation. So know that if someone is waiting for these kinds of test results, they are undoubtedly a giant mess of emotional angst inside. So give them a hug, get them a beer or maybe give them a little break in life because trust me; if you've never gone through this, you have no idea how scary it is or how brave they are being just by putting one foot in front of the other and trying to live a normal life with this giant safe poised above their head, ready to either disappear or come crashing down on their head.

So, I'm doing well! Another couple of posts to catch up on some other thoughts but I'll stop this one here. Thx for reading and sorry for the foul mouthed potty words.