Monday, April 18, 2011

Bone bender

I hadn't raced a bike for 3hrs since Herman road race last year. I'd been thinking of doing a few marathon races this spring/summer, so the 3hr-Bone Bender was a great target to test out the endurance legs.

The plans were somewhat mettled the week prior, with my bike developing an irritating rattle in the front, eventually leading to a diagnosis of a loose inertial valve in the fancy front shock (stupid moving parts), and an inability to fix the problem. But, my buddy green beans came through and offered his incredible 26-in YBB Moots. Since we're almost exactly the same size and weight, it was an easy decision to proceed with the plans.

Maggie came along for a night of camping followed by a day of racing. But since the race was in Lawrence, a stop for BBQ was required in KC:

We managed to get in with enough time to pre-ride the course and were totally surprised to find Clinton lake trails in superb conditions despite the a few a days of rain leading up to the race.

Sunday morning:

The race began with a LeMans start, normally something I enjoy. My plan was to test myself and see if I could keep up with the likes of Schottler, Bill Stolte, John Rines, and many more for the first lap.

I've been riding a ton of base miles this year, so I figured the 3hr race wouldn't be too ridiculous. Man, was I wrong. The hardest part for me was that there was hardly any climbing at all. Around 40-60% of the trail was rocky and technical, but generally the 9-ish mile lap was a hammer fest with almost no recovery. As mostly a single-speeder over the past few years who relies on going really hard for a few minutes, then recovering and spinning really fast, this was not something my body was used too.

We ran up a short hill to start, and then went for our bikes in a huge pile:

Unfortunately for me, there was another Moots a few bikes down from Green bean's bike. I grabbed the wrong one and proceeded to run for 50 yards to get out of the chaos and then realized I had the wrong bike. So much for a good start!

The first lap was slow and full of crashes. I went down once and got the seatpost twisted and forgot my multi-tool, so rode the rest of the race with a crooked seat. At the end of the first lap, John Rines and I ended up together and rode a steady and fast 2nd lap. I felt OK, but my HR was jacked super high the whole time. I just couldn't seem to relax. At the start of lap 3, I crashed again, dropped my chain, and my Garmin fell down a hill. So, I had to stop and collect myself before getting going again. John was gone. The rest of lap 3, my knee and ankle hurt and I started to get sore from the 2hrs of effort. Before heading back out for lap 4, I pulled the plug and decided to get some ice on my knee and call it a day.

Overall, an awesome weekend, with good friends, the wifey, and an amazing but painful day of singletrack!

3laps for the day:

Thursday, April 7, 2011

Bumps: part 4

The biopsy came back benign.

You'd think after 6 years of living with metastatic cancer in my body, that I'd have more control over my fears. I have to say, this last scare with the new bumps (check out those pictures, you'd be scared too!) rivaled the 2 week period this past summer when I thought I might have brain metastases. I don't think I've become a hypochondriac just yet, but as I wrote, there a certain biological phenomena with respect to the observations we can make on my disease which are ambiguous at the moment, but their interpretation suggests that my cancer is currently, or certainly will get, worse.

For example, this is a plot a protein produced by thyroid cells (Tg=thyroglobulin), which in my body are all cancerous. The amount is an excellent correlate to the amount or activity (how active/growing) of the cancer cells in my body (zero is 'remission'):

2x increase isn't good. However, no one has any idea why it went up. I was treated last January with radiation treatment #5. Going in, I had a ton of hope that the treatment would cure me, or at least come really close. I envisioned throwing a massive party with all my friends and family invited...kegs of beer, bikes, music, a true novel of modern medicine. I had both good rationale reasons to support this and also more romantic ones: First (rational), I had surgery number #3 after the first year of medical school in 2008. They removed 17 nodes and only 4 or 5 had cancer in them. I was then prepared for a radiation treatment by giving me a synthetic form of thyroid stimulating hormone (TSH), which serves to help my cancer cells (yes, I called them 'my', I've completely accepted these as a part of me!) absorb the radioactive compound that I drink. Anyway, this was all being done at John Hopkins (romantic hope) by probably the best and most caring doctor I've ever encountered (again, romantic hope). He had the idea that radiation treatment number 5 should be a big one (rational), so when I say 'preparing' for radiation treatment number 5, something different was happening than any other treatment I have had. Normally, I go off my thyroid hormone for 3 weeks, and my TSH get's really high. I then consume the therapeutic dose of the radioactive iodine and a few days later, lie down for a scan which shows where in my body that radiation has been absorbed and therefore, where I have cancer. We then wait 6 months to a year and see if cells die. Well, in the summer of 2008, my John Hopkins doc had a different idea: they would give me a shot of synthetic TSH in me bum, then a tiny diagnostic dose of the radioactive iodine and over the following few days see how much me pee glowed and how quickly my body dealt with the radiation. That study, called dosimetry, would allow for a calculation of the highest tolerable dose of radioactive iodine. All of that went fine and they figured out my dose to be very high. However, before they gave it to me, I had a full body scan to see where the radiation had been absorbed. Something amazing, hopeful, and wonderful happened: that scan was completely negative! It looked like those 4 lymph nodes they had removed a few weeks earlier could be the source of my stable tumor marker and that over time, it would significantly decrease. It looked like my lungs were free of disease because they didn't take-up any radiation. So, I did not receive my 5th therapeutic dose of radiation in the summer of 2008.

Over the next year, Cassidy was born, med school was amazing, and I started racing my bike again for the first time in awhile. It was awesome. But over time, it became clear that my tumor marker wasn't budging. Bummer. So, we waited.

Fast-forward to fall of 2009. Tumor marker is still stable but elevated. John Hopkins doc suggests that at some point, I'll need that 5th dose so I could either do it now or wait. After almost 5 years of living with this, I was anxious to get cured, so I choose to get the treatment. In January of 2010, I went back to Hopkins and was dosed with a therapetic level of radioactive iodine:

Then we waited a few days. For the post-treatment scan, I was hopeful that it would show very minimal disease. But that's not what happened. Instead, we saw this:

-extensive disease in both lungs, spread throughout all lung fields.
-multiple areas in my neck
-newly developed vertebral metastasis in T5

Shit. Everything changed. Again, I had been walking around for over a year thinking I was nearly cured and that this treatment would do it. That diagnostic scan came back could that be? What the fuck was happening to my body and why? I had just won the cat 3 state cyclocross championship! What on earth would happened to me now? Bone disease? Really?

That next summer, when the effects of the treatment would first become observable, I went to MD Anderson. I was scanned from head to toe many different times (although, my insurance wouldn't pay for a PET scan or an MRI of my brain) and everything looked the same as it did the prior winter/spring...not much change. The crazy and further dis-heartening thing was that my tumor marker doubled in the interval between the radiation treatment and the following July. Again, if the treatment worked, it should have decreased, not increased. Moreover, it fucking doubled! Not just went up slightly, but fully doubled. And, we didn't know why. A PET would tell us if the cells in my lungs, neck, and vertebrae were more 'active' and a brain scan would tell us if I had new mets in my brain. But, insurance wouldn't pre-cert those studies, so I had to go back to Missouri and wait for 2 weeks with those possibilities floating around my psyche until I could have the scans at Wash U. Luckily, there were no brain mets and the PET scan was unremarkable. So, we are yet to be able to explain why my Tg doubled.

So, I'm definitely take the results of this last biopsy with a great deal of equanimity. Who knows, it could be good or it could be bad.

Sunday, April 3, 2011

Not waiting around

Friday night, Maggie and I went out with some friends and met some new ones for a couple of drinks. Our esteemed Kona rep was one of the new ones. He introduced me to one of the best blogs I've read in awhile:

Plus, he was a super fun dude with similar taste/choices in reading, bikes, lifestyle, and religion (or lack thereof).

Anyway, when I was in college I read the book Portrait of the Artist as a Young Man. For a really long time, it was my favorite book. One of the things I took away, was the emphasis on making one's life a work of art in-and-of-itself. My older brother Lucas Miller has always embodied that for me...a father and husband who loves what he does:

yet at the same time has honestly grappled with some hard stuff.

The last year has brought me the challenge of frequently struggling with not feeling like my life's purpose is anywhere near completion. I've basically been on plan B from medical school (I'm doing research/PhD work at the moment) and have very mixed feelings about it, but remain convinced that given the state of my health where it stands, the journey is not worth the destination. And, one thing that I'm keenly aware of as a 31-year-old with a family and a disease that will likely one-day kill me, life is all about the journey. I feel off-track and I hate it.

Despite the stress of not knowing the results of the biopsy, this weekend actually ended up being quite excellent. I even got to race my mountain bike for the first time this year and ended up taking third place! That has got to be a good sign, right?

This is the way I feel,
A bit out of place:
and like whatever is going on in my body, I feel full of biological irony:

My weekend finished with me practicing my manicure skills:

Friday, April 1, 2011

New bumps: part 3

The schedule went something like this:

Wake up, drink coffee, eat, then head to the hospital.

I had the biopsy under ultrasound guidance around 10:30. Basically they stuck 6 needles into each of the two nodes and moved them around a bunch. This was after they numbed me sufficiently with lidocaine. The funny thing was the docs kept asking me yes/no questions while the needles were in my neck, a situation where I'm not supposed to move or talk. Anyway, they got lots of tissue.

Unfortunately we still don't have a definitive answer as to what is going on. But, the absolute great news is that the thing causing the lymph nodes to be big is definitely NOT what I feared most (anaplastic thyroid cancer, aka poorly-differentiated). Again, what I have in these nodes is NOT that. Yeah!!!

Now the weird news:
-If it were the same kind of thyroid cancer as I've had this entire time, they would have been able to tell that easily. But, they couldn't.
-One of the things prominent in the biopsied tissues is a lot of lymphocytes. Some of them are atypical (normal english translation= white blood cells responded to an infection or inflammation). But, there were a lot of lymphocytes and a cancer of the lymphocytes, aka lymphoma, could not be ruled out. That being said, they need to put a bunch of stains on the tissue to see if the cells are all the same (clonal). If so, then I have lymphoma. Then they need to figure out what kind. If not clonal, then I have some kind of weird viral infection with no other obvious symptoms.

But, there still is a chance that this could be inflammation due to my old friend, papillary thyroid cancer...and that those particular cancer cells are in those swollen lymph nodes.

So, more waiting.