Wednesday, July 28, 2010

Diazepam and rollerblading

Right now, nothing is worse than waiting and not knowing why my tumor marker increased. Medical knowledge and having read quite a bit of the literature on thyroid cancer outcomes isn't helping either.

For now, I'm waiting until Thursday morning at 7:30 to have an MRI of my brain, then probably the rest of the day until we get the results. In the meantime, I'm carrying around a bottle of valium and taking them as needed.

After knowing the MRI results, I'll either start spending a lot more time at a hospital as a patient (Wash U, Hopkins, or MD Anderson) or we'll keep looking via a PET scan for a potential source of the increased thyroglobulin.

I'm taking a few weeks off my bike, which is something good to do in between the bulk of the mountain bike season and cyclocross. I'm hoping I can finally fully get my knee healed, which although improved has continued to bother me off and on since April. Basically, every time I've gone on long rides it hurts. We finally decided that despite a very good fit on my bike, that my cranks are probably a bit too long, so will be going through the annoying process of removing cranks, selling them on ebay, and getting new, shorter cranks for at least 2 of my 3 bikes.

If the results of all this cancer stuff turn out to be OK, then after this break from the bike, some very serious motivation and jedi skills will be released upon the fall cyclocross season.

Thursday, July 22, 2010

MD Anderson July 2010

Today I met with my Dr at MD Anderson to discuss the results of a series of studies I had yesterday. The intent of the scans and blood draws was to gauge the response of my January radiation treatment. As has been the case over the past few years, my situation continues to challenge and baffle me, my family, and my doctors. There are basically 3 areas that were measured on Tuesday:
1. Radiologic measures of tumor size and appearance including MRI, CT, X-rays, and ultrasound of my neck, lungs, and back.

2. Blood tests for a protein secreted by the cancer cells in my body that is a pretty accurate measurement of how much disease is present

3. Blood tests for side-effects of the radiation treatment including red and white blood cell counts

The results are as follows:
1. No major change either bigger or smaller of the disease in my neck or lungs. And evidence of improvement of the single known bone metastasis in my 5th thoracic vertebrae
2. Increased by 40%
3. Both down, with one of my white blood cell counts (neutrophils) pretty low.

So, there are both good and bad signs. First, we’re really happy that the treatment had a positive effect on the bone met. The bad news is that it didn’t seem to do much for my lungs or neck and for the first time ever, my tumor marker really went up. The latter is super scary because we don’t know the details associated with that increase, like whether or not I have disease in areas we didn’t look (e.g. brain, pelvis) or if the neck or lung disease is growing more quickly and no longer responsive to the treatment I received in January.

Maggie was with me to meet with the doctor today. My mom also came to stay with Cassidy at the hotel. My mom seems to be doing pretty well but Maggie and I are both scared, confused, and very angry. One of the things most annoying is that one of my scans that had been scheduled for me yesterday got canceled because insurance didn't approve it. The purpose of that scan was to answer some of the questions we're left with. Unfortunately, insurance now doesn't have a choice...I have to get a PET scan, but will have to do so back in St Louis in a few weeks. More waiting.

Friday, July 16, 2010

Rage and self-love

Racing attitude yesterday: Breath. Chill. Don't compare to others, only compare myself to myself with past accomplishments and future potential. Go out and give it 100% and wherever the chips fall...

It was a constant mantra during the race yesterday and it felt good. Real good. I ended up getting second and missing the win by just a wheel or so. I also didn't fall or ride outside of myself too much...finally.

Next week, yikes. Don't have much of a mantra for that. There's really 3 possibilities:
-Tumor marker lower and scans show less or smaller tumor, i.e. the treatment in January worked.
-tumor marker the same and scans show no change, i.e. still don't know if the treatment worked or not.
-Tumor marker increased, tumors spread to either more bone or brain.

Every once in awhile, I get scared about what is going to happen but generally, I really don't know what to expect and don't really believe that positive intentions or a good attitude will affect the outcome, only my existence in the meantime. The cold hard reality of nature, in this case malignant cells unresponsive to the normal homeostatic mechanisms of the body, is something beyond my control and I've accepted that. I just wish that this situation didn't have to hurt my family.

Here I am blogging away about racing bikes in-spite of a bad hand I've been dealt and sometimes I wonder if it is doing any good. Honestly, it often feels a bit narcissistic (you should read this op-ed btw).

Sunday, July 11, 2010

Life in July

This is a weird month. In 2 weeks I'll have probably one of the biggest and most important doctors visits of my life. The basic story with my cancer situation, which I'm intentionally trying really hard not to think about and therefore not write about, is this: In January, I got my 5th radiation treatment in 5 years and there are 3 big important things for you the reader to know about that treatment:
1. Due to the fact that I've had 5 of these treatments, I'm approaching a generally accepted 'limit' for the amount of radiation I can safely receive. It was already a bit of a miracle that I was even still able to express me gametes (yes I meant to write 'me'...just seemed funny), but with 5 treatments there's risk of leukemias and other bad things. Plus, depending on what happens with item #3, I probably won't ever get another treatment.

2. The scan post-treatment, which showed where there is still thyroid cancer in my body revealed a new metastasis in my 5th thoracic vertebrae in addition to previously known metastases in both lungs and a few areas of my neck.

3. It takes 6-12 months for treatment I had in January to have any effect. So, even though we knew about the vertebrae and all that, we had to wait and live life as normally as possible in the intervening 6 months. If there's significant improvement, then I may have another radiation treatment. If there isn't, then I won't. The latter is associated with a great deal of ambiguity and one really knows what the hell to do.

Ok, enough about that...on to bikes. I'm proud to announce to the world that my 21month-old daughter consistently knows the difference between a wheel and a tire. Hells yeah.

-Thursday was dirt crit #2, I was all stoked cus I got second the first race and felt physically much better thursday. But, 3 pedal strokes after the official yelled 'Go', my chain fell off. I had pulled my wheel forward in my horizontal drops and therefore no longer had chain tension. Of course I wasn't carrying a multi-tool for a 40 minute race, so I had to run around to find a wrench before I could fix it. Damn. There went any chance of doing well in the series.

-Today (Sunday) was the MWFTS race in Springfield. I really will try hard to not say anything negative about the course, but generally I was not stoked and certainly won't ever race there again on a rigid single speed. I had never ridden there before but was told that a bunch of new trails had been built and all those rocks and roots sticking up out of the ground seriously kicked my butt. I just couldn't seem to carry any momentum or flow during any of the course. Oh well, certainly no one's fault but mine...but if you ever go ride Sac river, bring a bike with suspension if you want to go fast. The race was well-run and there were definitely a lot of strong guys there, but it was a serious suffer fest for my upper body and back...both of which have never really been issues in many bike races for me. I quit after completing 2 of my 3 laps in around 4th or 5th place.

Friday, July 2, 2010

Loads of fun

Thursday night was the first race in a July Short track series in Castlewood. Last year I went and watched Maggie race only to commit to myself to try and make every effort possible to be there for some racing this season.

Short track mountain bike racing consists of a shorter total amount of time than the typical cross country races. This series is similar to road crits, where races mass start and a clock begins ticking. Depending on what category, races will last either 40, 30, or 20minutes then there will be a bell which signals 1 lap left. My race was 40+ 1 lap.

I put a 36x16 and rigid fork on my bike (pictures to come) and set off to give it my all and have a blast.

Bob Arnold of DRJ racing posted a really great video of the race. I'm the guy in the black Team Seagal kit coming by at ~2:30.

2010 Dirt Crits - Race #1 from bob arnold on Vimeo.

Ralph and his crew have done an incredible job with this event. It was a ton of fun and very well organized. Thanks so much to everyone who helped! I can't wait to do more!