Friday, April 30, 2010


I haven't been writing much about the cancer situation, mostly in preference for the topic bicycle adventures and balancing family time. Reality however, is catching up. As I wrote in my last post, I'm in stand-by mode until July, when I'll go back to MD-Anderson for a bunch of scans.

Yesterday I received my appointment information informing me of when I'll be seen (no choice, kind of like being called to the principles office or something). Check out my schedule for July 21st:
6:30am Blood sample collection
7:30am PET scan prep (do not eat for 6 hours prior)
8:00am PET/CT Injection/localization
9:30am PET/CT Skull to mid-thigh
10:30am Check-in for CT exam
11:00am CT scan, chest/head and neck
12:00pm chest x-ray
2:30pm Ultrasound of neck
4:30pm Prep for MRI
5:00pm MRI T-spine w/ and w/o contrast
6:00pm MRI Lumbar-spine

Then at 1pm the following day, I see my doctor.

This weekend I'll be in Columbia. Over the next few weeks, my wife Maggie will be studying for her first medical licensing 'board exam', which is unfortunately the hardest of them all and the most important. I took mine last June and will never forget my ridiculous study schedule (usually 6:30am-noon, then 1 to 1.5 hour ride, then study until 5, eat with family, study until 9 or 10pm, sleep, wake-up, and repeat).

With her board exam in mind and some changes to our income, I probably won't be racing my bike as much as I thought. It is even looking like our planned trip to Colorado at the end of June for vacation and coinciding with Marathon Mountain bike national championships in Brekenridge, for which I'm registered, is probably not going to happen. Racing bikes is really expensive and often beyond the means of a couple of graduate students...but traveling to race bikes is even more expensive.

Monday, April 26, 2010

Le Tour de Tick- Neosho, MO Mtn bike race Men's Expert

What a name for a race right? Despite images of babesia, RMSF, and lyme disease flashing through my head (yes, I'm aware of the very low incidence of these vector borne diseases in Missouri) and after a great deal on deliberation within myself and with my wife, I decided to make the 4 hour drive from Columbia this past sunday. Luckily, 2 crazy friends, Shotgun and Green Beans, were also somehow able to justify 8 hours total car time for less than 3 hours of pedaling around in the woods, in possibly very muddy conditions, as it had rained a great deal the day before.

Looking back on the decision, I'm glad I went. The race went well and the conditions were very good in my book; low 60 degree temps, 90-95% tacky sweet-flowy-singletrack trail, and 5% mud puddles (keeping it interesting). However, as I was thinking to myself this morning, I re-justified a self-imposed rule of limiting my drives to 2-3 hours max for any bicycle related events. Any longer just isn't worth it. Living in Columbia, that is usually a great limit, since it gets me to Lawerence west, Alton east, and Springfield south. Plus, it also usually gets my wife and 18month old there as well!

My wife and I arranged to have my Mom come down and stay with Cassidy on Sunday, so that Maggie could study and I could head out to roll around in the mud (yes, that was supposed to be an image of regression and you haven't been clicking on any of these links, you should click that one). Since Maggie and Cassidy usually come to mountain bike races and Maggie loves to ride as well, I had a great deal of ambivalence about the decision of going without her. In fact, I didn't really commit to going until Saturday morning and even then, thought that the rain would probably cancel the race.

I just really, really wanted to race my mountain bike. As I've written about on many occasions on this blog, cycling has been one of my sources of meditation and I would argue, healthy regression to a child-like state. Yes, the competitive aspect of it often can be problematic but I am and will always be intensely self-competitive and racing provides a venue of that in addition to new camaraderie, getting to be outside, and in mountain bike racing, alone in the woods! I guess I especially wanted to race my mountain bike this year after spending months in doubt that I would ever be able to do so again, see last paragraph of link.

Racing road has been a lot of fun for me, but I've been a mountain biker since I got my first neon green and yellow Trek 800 from TC when I was in the 6th grade (age 11, circa 1991)then 2 years later, a sweet Fisher fromMesa cycles. I remember during 7th grade, my mom would go and drop me and a friend off at chubb trail and we'd ride the entire trail with only a bit of water, no tubes, pumps, chain tools, etc. Mountain biking is almost always an adventure and the events associated with mountain biking are completely different than road biking.

That was particularly apparent yesterday at the racers staging meeting before the race. I don't know how many kids and families were there, but I'm guessing 30 kids under 12, all stoked to go romp around on their mountain bikes and 'race'. And in the beginner race there were a ton of guys and gals in their regular clothes, just giving racing a shot for the first time. I love that about mountain bike racing!

Ok, on to my race. This was my first race with the following equipment choices:
-geared mountain bike (all last year I raced single speed) since I was 19
-full suspension 29er (I sold my single speed over the winter and with the help of Karl and the advice of Black Matt Francis opted for a squishy bike with big wheels with the rationale being to minimize the effect of "jarring forces" to my possibly weakened vertebrae.)
-sram xx

I think I need to race more to really have a better assessment of the equipment choices, but yesterday the trail was pretty flat and the gears were awesome (especially the big ring!).

The 4 lap-race went something like this:
-5th place into singletrack behind (1) singlespeed Garret (2) Shotgun and (3/4) guys in green/black kit.
-Shottler's chain dropped-->he's in last place
-I attack on the first possible location, head to front start time-trialing
-Shottler catches me, we ride together for 10 minutes and get a huge gap on the field
-I bobble, shottler passes and attacks (punk), I catch back on but with a 15 ft gap
-Shottler turns, I hear the familiar noise of him flatting, and I prepare to make fun of him, but then I turn (exact same spot) and flat as well.
-We change our flats right across from eachother, 3 minutes go by, field passes. Then sport and single speeders pass. A few mintes later, flats are finally fixed.
-Back on bikes, but shottler has 3 minute head start, I figure I won't see him again.

At this point, I'm thinking to myself that I should focus on riding smooth and make the decision not to push too hard for laps 1 and 2, so that I save some for laps 3 and 4.

Basically that is what happened. I started passing the expert field during lap 3, including Shottler who was on the side of the trail fixing his second flat of the day. At the end of lap 3, I was in second and knew one guy was up there somewhere. The motivation at this point however came from behind, as I expected young shotgun to quickly and with much frustration stomp all over us and win the race. So, I rode hard and caught the guy in first (passed him like he was standing still) and continued the effort to cross the finish line. As I did, I saw Shottler in his street clothes looking rather forlorn. That kid as the worst luck ever. He easily would have won if it weren't for the flats.

Hilly road races are a ton of fun for me and I hope to do more in the future, but not much compares to mountain bike racing on a cool spring day.

Sunday, April 18, 2010

This is the photo of me and Cassidy after getting home having completed the longest, hardest, road race I've ever done. The race was 90 miles with 5000+ft of vertical ascent, taking me 4hrs and 9 minutes to complete. I couldn't be happier with the results and honestly don't really know what to say.

I was nervous going into this race, as this is my first season racing as a Cat 2 in the Pro/1/2 category. Plus, I'm still getting the hang of road riding and the group tactics involved. As a 15+ year mountain biker, many of the 'rules' don't always make sense. The fact that I did well today speaks volumes for the cycling scene in Columbia, Missouri because it is the many veterans who have shown me the ropes and always have had encouraging critiques and advice about positioning myself in the group, working in a break, riding in the wind, energy conservation, and riding as a member of a team. Josh Johnson is always super nice and constructive. Pam Hinton and Nate Means are always awesome examples of riding smart and smooth. Shottler is a good example of how to attack and hardly ever getting caught. When around, Luke Musselman has good advice. Tracy helped me think about riding smooth. Larry has really good racing advice about team tactics and how to chase down breaks. Tom Brinker helped me get my bike fit down and resolve some knee troubles. Karl Kimbel and Josh Carrol both help me keep my bike rolling. And most of all, Dave Henderson and Ethan Froese are great teachers and have been nothing but supportive this past winter and during the race yesterday. (i really hope I'm not forgetting anyone from columbia)

Ok, that was probably excessive 'thanks' for a 4th place finish in a small Missouri road race, but I genuinely mean it and want to lay all of that out there.

Me with my cliff bar tumor in my cheek:

In the first few miles of the race, I managed to make a 7 man break which contained the a guy I thought was in second place (later identified as Bill Stolte who I've now been informed was not in second place) and another guy in the top 10 of the omnium, Aaron Pool. My teamate Larry and I were both there and feeling good having not raced the previous day. Our job was to hang in the break and hope that our teamate in 3rd place, Dave Henderson could bridge up to us. Before the race began, Dave had told me that he thought first (Austin Allison) and second would both be really strong and that he didn't have high hopes of gaining enough points on either to make it into the top 2 spots. That was nice, because it allowed Larry and I to work for the break and me to be able to snag some of the KOM points at the end of each of the 3 laps. The break worked well together during the first lap and were told that our lead was 2 minutes about 15 miles in and 3 minutes 25 miles in. At the beginning of lap 2, the leader of the race joined our break and things got a little weird for a while. Larry and I debated about what to do and Bill definitely shut-down his pulling efforts. For awhile, I thought we were going to get caught because we slowed significantly. But eventually, Bill launched an attack and our group starting chasing. A few minutes in to our chase and a little over half way through lap 2, Austin flatted. At around the same time, Larry bridged up to Bill leaving myself and 3 other guys in the chase (Devin Clark, Aaron Pool, and a guy from St Johns Mercy). Larry eventually hit a wall and fell off, leaving Bill up the road, into a headwind all-by-his-lonesome and our group keeping him comfortably in sight.

Coming through town between laps 2 and 3, I still felt really good. Aaron and I hammered it up a really steep climb in town and at the start of lap three, found that Devin and St John's had fallen off. It became clear that Aaron had been playing it smart all race and had a ton of energy left. We started trading steady 30 second pulls and were gaining on Bill. It was probably around mile 68 or 70 that the efforts really started taking a toll on me. I told Aaron I couldn't hold it and fell off. Luckily, Devin Clark was close behind and he and I fought the pain and finished the last 20 miles together...keeping Aaron and Bill in sight. At the end, Devin and I sprinted for the line and he had me by a bike length.

That's about it for 2010 Hermann! Super hard and fun day, can't wait for next year!

Wednesday, April 14, 2010

Facts, figures, and reality

I'm going to try and summarize what happened at MD Anderson. Hopefully if I also provide a bit more background about what we already knew about what is going in in my body, it will make sense.

After my January 2010 radiation treatment, the scan afterwords indicated that there was uptake of radioactive iodine, therefore there was cancer, in my neck, lungs, and 1 small spot in my vertebrae.

First a couple of facts:
In 2009, 37,200 new cases of thyroid cancer were reported in the US. 10,000 in men and 27,200 in women. In the same year, 1,630 people died from thyroid cancer (690 men, and 940 women). Just for perspective, in 2009, 1,479,350 Americans were diagnosed with cancer (excluding squamous and basal cell skin cancers), 766,130-men and 713,220-women. Total death rates from cancer in 2009 were: 562,340 people with 292,540 being men and 269,800 women.

Obviously cancer in bone sounds pretty bad. So, my doctor at Hopkins told me to go see someone who basically only treats aggressive thyroid cancer in Houston. Interestingly, the MDA guy thinks that all of my cancer is pretty stable and that the nodule in my back does not significantly increase my risk for (1) fracturing the vertebrae or (2) progression of the cancer. Both of those points are really important because they have huge implications for my daily life and for my plans over the next few months. The part about progression is interesting; when someone has metastatic disease, it isn't the metastases which do the spreading of additional cancer cells. Instead, it is usually the area where the primary tumor was located. In my case, my neck. So, he was much more concerned to know that there was persistent disease in my neck. Even though I've had 3 surgeries with the most recent in the summer of 2008 I may need another surgery.

Because this doc at MDA sees so many cases of aggressive thyroid cancer, he also sees more of his patients die than most other doctors treating thyroid cancer. He is also one of the first people to ever tell me how and why people die from thyroid cancer...which, despite the fact that may seem pessimistic or overly morbid to some, it is actually exactly what I wanted to hear. Mostly because I've been dealing with this for 5 years and no one ever talks about the small percentage of patients who don't ever get better. Anyway, the people that die often die with bone marrows that have been totally ablated by too much radioactive iodine and persistent disease (i.e. cancer that doesn't respond to radiation), so this doc is not a big fan of using additional radiation in me, sense it probably will do more harm than good. Furthermore, it is usually the case the bone mets and lung disease cause problems but don't kill. It is the persistent disease in the neck which often causes serious problems because the cancer grows into or interferes with the integrity of all those important structures in the neck (trachea, esophagus, jugulars, carotids, nerves, etc).

So for me, the plan is to watch the areas in my neck and bone very closely and to see if the radiation treatment I had in January has any positive effect. If either area shrinks, then we would consider giving more of the radiation. If the areas stay the same size, then we'll keep watching them. If they grow, then for the bone, we'll zap it and for the neck, I'll have another surgery.

Those decisions will be made this summer, hopefully after the 2010 Brek Epic! Which is to say that this doc saw no real issue with me living my life how I choose over the next few months! Mountain bike, here I come!

Just realized I didn't include any figures yet (see title) so here is a breakdown of the numbers I listed above:

Monday, April 12, 2010


I’m writing this from a very exhausted and frustrated state here at MD Anderson in Houston. We’re staying right across the street from the hospital and it is clear by walking around that everyone either has cancer, is here with someone with cancer, or is an employee. There’re lots of people in wheel chairs and inside me, very raw feelings about that.

It is amazing how many people are here. The room where I waited to get my blood drawn after I saw the doctor was like a school cafeteria. Easily 200 people were in there waiting to pee in cups, get needles stuck in them, and have various scans.
I don’t even know how to communicate about the meeting with the doctor and the feeling I have while walking around this place. Here are some random stream of consciousness notes. Sorry for the lack of narrative, but this is the modus operandi of my mind right now:
-Two different people asked if I was here visiting someone.
-The phlebotomist and I joked about how stupid it is that there are 4 different blood draw tubes with “mint”, “green”, “lavender”, and “purple” tops.
-The doctor who’s practice is 95% thyroid cancer patients doesn’t seem to know what to do with me.
-I don’t get chemo because it isn’t bad enough.
-The chemo drugs suck.
-I probably have a pediatric variant of my disease.
-Nice, smart fellow with cute red shoes just like Maggie would like.
-Reading the China study, pretty convincing stuff. I'm going to try not eating any animal products for awhile.
-No bike, but saw a guy with his wife who had shaved legs and was eating a huge ice cream cone hanging around the hotel.
-Still anemic from my last radiation treatment, wish someone would give me some EPO.
-Had 8 tubes, 30ml of blood drawn from my arm today, can I have some EPO now?
-Maybe another surgery on my neck
-Don’t get to come home in the morning, have to stay another 12 hours.
-My ego is crushed, because the nurse measured me as 5ft7and ½ inch. I’ve always told people I was 5’8’ and even bet her a cup of coffee when she said there was no way I was 5’8”. Shit, I’ve got to bring her some coffee now. Good news is, resting HR is 41.

Now here are some pictures to make us all happy:

Sunday, April 11, 2010

Busy weekend!

4 main things to write about today:
1. Saturday’s bike race: Hillsboro-roubaix
2. Trip to MD Anderson to be evaluated by doc who treats very aggressive thyroid cancer
3. Sunday’s bike race: Tillis park
4. MD/PhD

1. This is an 87 mile road race about an hour northeast of St Louis. It usually attracts a big and competitive field, with teams coming from all over the Midwest. It is also famously on very narrow farm roads with lots of sharp turns, a couple of short punchy hills climbs, and a long section of loose brick. As a cat 2 rider, I race 3 laps with the cat 1 and pro riders. With that in mind, nutrition, staying out of the wind, and conserving energy are the keys to finishing.
I felt great the first lap. I was riding about ¾ back in the field, staying out of the wind and taking in water and calories. I was feeling pretty optimistic for the remainder of the day as we cruised down a few mile stretch of ‘normal’ 2 land highway which leads back to town. Right before town, there is a relatively steep 1 minute climb which also doubles as the feed zone (where riders pick up fresh water bottles, on the go) then a little flat followed by a second 45 sec short, similarly steep climb leading to a gradual downhill in town where there is nasty, rough bricks, and broken up payment. There is then a sharp turn and a long straightaway, which on Saturday was right into a headwind, leading to the start/finish.
Before the race, the youngins (myself and Jon Shottler) of the CBC race team were trying to take in as many of the instructions and guidance as possible from the 2 generals of our team (Ethan Froese and Dave Henderson, both of whom are in their 40s, very experienced, and are some of the faster road riders in all of Missouri). One of the things Dave told me was to be careful in the feedzone, because that is often where attacks and crashes happen. If you’ve read my blog at all, you know that I have a metastasis of thyroid cancer in my 5th thoracic vertebrae, and because of that, my vertebrae is slightly weaker than it would normally be so I try my damn-dest not to fall. Breaking my vertebrae can mean bad news for my spinal cord. Anyway, at the base of the first climb I wasn’t paying as much attention as I should have and lightly crashed. All was well, only a little road rash on my knee, but in the period of time it took to get back on my bike and clipped in, the field of 120 bad-ass riders was gone. So I punched it up the climb and pedaled as hard I could through the sketchy brick-laden descent, then into the headwind on the start/finish straightaway. A little after the start line, before the first turn on the course, I had caught back on, but had just spent about 4-5minutes pedaling at about 100% effort.
Back in the pack, I started to feel comfortable again, but definitely noticed that coming out of each turn, the pack was pedaling a lot harder than in the first lap (probably 400-600watts)…and there were lots of turns. Halfway through the second lap, my hamstrings started to cramp. Bad. After fighting it for a little while and staying in, I eventually got spit off the back of the pack and soon found myself pedaling alone. Five or ten minutes later however, I was joined by a group of 6-7 guys. Once we got back on the main highway, me and this other guy starting taking some hard pulls and ended up dropping the other 4-6 guys and next thing we knew, the main field was back in sight. We chased them down and ended up catching back on right before lap 3. But at that point, I was toast. So I called it a day and didn’t feel the least bit bad about it. Next year, I’m coming back. I really enjoyed that race.

2. MD Anderson is famously aggressive, so I’m really going just to get their opinion. I have a big list of questions and concerns and hopefully will get them answered.

3. My flight for Houston left St Louis at 6:30pm. I found out there was a criterium 15 minutes from the airport starting at 2:45 which lasted 60 minutes. Perfect! I felt really good today until about 30 minutes in, when I had the exact same cramps as yesterday. So I pedaled softly for a lap, only to come upon the a bit of carnage: 4 riders had crashed on the course and seemed as though they could be hurt. I stopped and made sure no one had broken ribs puncturing/collapsing lungs or serious head injuries. Things seemed fine, so I moved on. While there, a park ranger came and both myself and Luke Musselman (sp?) suggested an ambulance. Anyway, I guess after that, I should have gone directly to the race officials and let them know there would be an ambulance on the course. So, when the ambulance arrived, we all got stopped by the officials and I got yelled at. At first, it really rubbed me the wrong way, but a bit of humility set in and I now realize that they had a valid point. I just argue with the way in which it was communicated and still stand by my decision making skills to request an ambulance myself, then communicate that decision to the race officials (their argument to me was that they should be the only ones who should call an ambulance). Water under the bridge now. The clock was ticking and I had a plane to catch, so when the race started again, I was on my way to the airport.

4. I like science a lot and want to contribute. I think I'm going to change course a bit and commit to some time in the lab.

Sunday, April 4, 2010


My body went through a lot last week. I was basically a human pin cushion, with a vertebral biopsy, a contrast CT scan of my chest, and an MR scan with contrast of my spine.

First things first:
The biopsy results are back and it is indeed the same cancer which I've had for the last 5 years that spread to my 5th thoracic vertebrae.

Now, what does that mean? Well, at this point the exact diagnosis is 'well-differentiated papillary thyroid carcinoma', similar to the tissue seen below (note-not my tissue):

One of the concerns about my situation is that my thyroid cancer is weird relative to other patients with similar cancer. 'Papillary' represents 75-85% of all thyroid cancer, although it is most commonly found in female patients and associated with radiation exposure (neither of which, obviously or not, apply to me). It is also not generally aggressive as long as it is well differentiated (that is what is taught in medical school and based on my case, clearly that isn't entirely true), it can invade the lymphatics and metastasize to nodes (1/2 of cases) and to the lower lobes of the lungs (10-15% of cases). There are 3 distinct mutations in cellular pathways that can lead to papillary carcinoma.
-First, there are rearrangements of the oncogenes RET (10q11) tyrosine kinase receptor or the NTRK1 (1q21) receptor, that make the kinase domains constitutive. Both of these receptors signal through MAP kinase pathways and neither is normally present on thyroid follicular cells. Together, these make account for ~50% of papillary thyroid cancers. Chromosomal inversions or translocations cause recombination of the intracellular kinase-encoding RET domain with a heterologous gene called H4 or PTC. Recombination generates the RET/PTC chimeric oncogene. This seems to be induced by radiation, but can also occur randomly. It is interesting to note that 60% of post-Chernobyl PTC harbored this mutation.
-Second, an activating V599E mutation in a gene called BRAF is present in 33-50% of cases. BRAF codes for a MAP kinase pathway signal transducer. Virtually all papillary carcinomas exhibit either BRAF or RET/NTRK1 mutations. With BRAF mutation commonly being more aggressive. Although I’ve never been genetically tested, my tumor almost certainly harbors a BRAF mutation.
-Third, involves RAS mutations in 10% to 20% of papillary carcinomas.

Treatment for papillary: Tumors < 1 cm→Lobectomy & isthmusectomy. Those >2cm→ Thyroidectomy + neck dissection followed by I-131 treatment if there is evidence of metastatic disease. Thyroidectomy alone if the nodule is solitary.

Prognosis: 10-year survival rate is in excess of 95%. Overall prognosis depends on age (younger=better), presence of extrathyroidal extension, and presence of distant metastases.

It is that prognosis part that is the concern. To the knowledge of the physicians treating me, it is extremely rare for papillary thyroid cancer to spread to bone in a young person. The fact that it is now proven to have done so in me means:
a. My situation warrants a 'case report' (meaning, some doctor writes up my case and publishes it in a journal for others to read)
b. No one knows what the hell to do with me.
c. Now that we know what we're dealing with, hopefully we can get a better treatment plan

At this point, the plan we have is a good one. Next monday I'll go to MD Anderson to talk with someone who often deals with aggressive cases of thyroid cancer.

I think I'm tired now of writing about this. At a certain point, it is like there's a switch that someone flips where I just shut-down if I think about it too much. I don't know why I felt the need to put all the medical stuff on the blog...I imagine very few people found it helpful. Oh well, sorry about that. Like I've said in the past, this blog exists partially as a katharsis.

Cycling news:
Managed to ride almost 300 miles last week. Very psyched about that. Next week is a helluva race and I'm going to be aiming just to finish.