08.21.08
Posted in blog, cancer, cycling, gvhd at 12:26 am by 1speeder
I woke up this morning and actually had hearing, mostly, in both ears. Yesterday, the pressure in my right ear was so bad all day, that not only was I deaf in the right ear, but it felt like my eardrum was trying to rupture. All day. Today, my sinuses were a lot less congested. I’m hoping my head is clearing out, finally. I got a late start, but I took the fixie out for a 22 mile ride some time after 12:30. The sun wasn’t oppressive and it was cooler out too. This year my skin seems to be less sensitive to sunburning than last year. I think that the farther out from my BMT that I get, the risk of explosive GvHD diminishes. This is still just speculation on my part. I am still very paranoid of the sun.
My legs are weak again, like I just riding after a long hiatus. By mile 7, my calves started cramping. On Sept. 7, I have to ride the NYC Century and I can’t start cramping up after 7 miles. This year will mark the fifth consecutive year that I’ve ridden it through my five years as a cancer patient. This will be the second year riding with chronic GvHD, which I can emphatically state is much more difficult than riding with a recurring Stage 4 aggressive blood cancer, which I also did twice, in 2005 and 2006. At least, with active cancer before treatment you’re not on all these medicines, the worst being steroids, and you can still train pretty hard. Not so with cGvHD.
So, with 2.5 weeks before the ride and basically starting from nearly a zero condition level and still fighting a sinus infection, I have to ramp up quickly, but be very careful about how I do it. Training too hard will just prolong my infection, preventing training. I think I can do this. At the very worst, excepting bailing out of the ride, I will end up with the slowest NYC Century ride I’ve ever done so far. And yes, I will again be riding singlespeed. So, with so little time to get back into shape, my training strategy, which started with today’s ride, is to ride almost every day, alternating a training pace on one day with a recovery spin the next day. This will allow me to get the mileage in that I need to base up, while minimizing the stress on my body and my immune system. It’s my immune system that is the weakest thing about me.
Ezra Caldwell is a bike builder with, I am assuming, testicular cancer. His oncologist told him to stay off the bike, so he built this seatless bicycle.
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08.18.08
Posted in blog, cancer, cycling, gvhd at 7:00 pm by 1speeder
All weekend I was thinking about whether or not I should pull the plug on this blog. Maintaining it and taking the time to post has always been a burden for me. I did it to keep family and friends updated on my cancer journey and my general health, which changed on a daily basis. A single blog post relieved me of having to reply to 25 emails detailing the same events every day. Then, it was to provide information to other cancer patients looking for help and encouraging words to read. I realized that last year about this time I was in the same predicament I am in this year. My daily life is not centered around cancer, per se, but rather living with chronic GvHD, which is not as dynamic and “exciting” as cancer. It’s more like a purgatory. Being an optimist, I know I am on my way towards being a healthy person once again, but this “purgatory period” of cGvHD is a real test of patience, strategy, and long term determination. As some have noticed, my posts have become quite infrequent, a bit sparse, and not very indicative of what I’ve been up to. As my cancer-related activities have declined, I don’t feel a need to divulge anything about what I do. But, as someone with the perspective of a 3-time patient of very aggressive cancer, a BMT patient, and a cGvHD patient, I feel I have a duty to provide others with whatever experience I’ve gathered along the way and to encourage them to push on.
You never realize how much you take your immune system for granted during your healthy, normal years until your immune system stops working. Suddenly, you realize how limited you have become, the life changing compromises that have to be made, things that you thought were to become that never will in the way you envisioned it. And that’s OK, as long as you are alive and can see a glimmer of hope in the future.
This past weekend was the annual mountain bike weekend adventure, that we call MB3. We’ve been doing this since the mid-90s. However, for the second or third time since then, I wasn’t able to go, not only because of financial reasons or because my physical condition is just so far below that of everyone else’s, but because my immune system just can’t handle being around so many people in that type of “adventure” environment. Even if I didn’t ride at all, being in the same cabin with other people wouldn’t have been a good idea. Besides, I’m still sick. I’m going into my third week of this infection. It takes me a long time to fight these infections.
I’m still coughing up, and blowing out, big chunks of nasty stuff. I use the neti pot three or four times a day. There’s still so much pressure in my head that I still can’t hear out of at least one ear for days at a time. This is an improvement, however. Before a few days ago, I was deaf in both ears for nearly two weeks. The rattling chest wheeze is still there. I still feel faint sometimes. But, I still I try to get my bike rides in when I feel I can.
Yesterday’s ride was a 32 mile towpath ride with Carl. I was fairly weak and spent much of the ride way behind Carl. I had to make sure I didn’t push too hard, which would have caused me to stay sick longer. I took the Trek 620 to the towpath for the first time. Getting my conditioning up for the upcoming NYC Century while I’m sick and while I’m tapering down on prednisone slowly requires a fine balance of exertion and holding back at the same time. I should be doing metric centuries by now already. I feel like I’m just starting from zero yet again and having to ride the NYC Century on a singlespeed in less than three weeks time.
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08.11.08
Posted in blog, cycling, health at 12:55 pm by 1speeder
While being sick and not doing any real riding, I finally got around to setting up the 1984 Trek 620 that’s been hanging in the garage for over a year. I left it as stock as possible, but had to swap out some components that just wouldn’t suit me for the bike’s intended purpose (errands, towpath rides, commuting). The Sachs rear derailleur was broken anyway.
I first set up the bike as a singlespeed, because of the broken derailleur, but had to leave the 6-speed freewheel cassette on the hub anyway since it was one of those helicial freewheels. I popped on a 38T chainring and set the gearing at 38×17, which was nice for just riding around town. To make the bike more versatile, I popped an old XT derailleur on. For now, I’ll leave it as a 1×6, since I don’t intend to do any real touring on this bike. It’ll will primarily replace the errand bike I was using for the past five years, the Miami Vice Rockhopper BUUB (butt ugly utility bike), which was so rusted out I decided to strip it down, one day to be repainted and rebuilt back as a vintage MTB.
Healthwise, I’m still sick. After my sore throat over a week ago, it moved into my sinuses, which are still congested with yellow mucous, but not as much. I’ve been using the neti pot a lot again. A few days ago, it moved down into my throat and upper respiratory area, causing minor wheezing. I’m still coughing up yellow sputum, but it seems to be decreasing a bit every day. One annoying side effect of this cold is my inability to hear well. There is a lot of pressure in my head and it sounds like I have ear plugs in all the time. I have to crank the volume of the TV while we watch the Olympics. There is also the “rushing train” sound in my head when I stand up and do something. Part of this could be attributed to not drinking enough water, although I think I drink enough throughout the day. My back/SI joint soreness is diminishing, probably due to my taking it relatively easy last week. I did several short rides on the Trek around town and on my 10-mile Monroe loop to test out the bike, nothing taxing though.
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08.08.08
Posted in blog, cycling, gvhd at 3:21 pm by 1speeder
Since tapering down the prednisone from 70mg to 50mg on Tuesday, my back (actually, my SI joint according to Deb) has been hurting. It’s that “internal” pain, like when your bones hurt when taking Neupogen, not a muscular soreness or fascia tightness. It’s noticeably worse today. Coincidentally, last night I was riding around town on an old touring bike, a 1984 Trek 620, that I refurbished and overhauled, and my riding position was not completely tweaked correctly. This may have contributed to the pain today a little, but my SI was hurting before yesterday. I didn’t ride since Sunday, due to being sick. I might join Greg and some others on Sunday morning for a casual 6MR ride depending on how I feel.
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08.04.08
Posted in blog, cycling, gvhd, martialarts at 8:08 pm by 1speeder
Two and a half weeks ago, I started an experiment to see if I could strengthen my body by ramping up my cycling with more mountain biking, as well as basing up more road miles for the upcoming NYC Century, and beginning a regular boxing training schedule with Viraf. The typical focus-mitt training, which also included basic muay thai training drills with thai pads, was for a more total-body exercise, and the cycling was just for cycling, which I’ve been doing for the last five years. This wouldn’t be any thing special; during my hardcore martial arts training throughout the entire 90s, I used mountain biking as a primary cross-training discipline to supplement my martial arts attributes to great effect. What made this a big “what-if” is the fact that I’ve been on a massive, 70 mg daily dose of prednisone since May and my immune system and strength have taken a proportionally massive decline. I thought I could do it. Well, midway through last week, I started feeling run-down, sluggish, and sick. I didn’t give my body ample time to recover between daily exercise sessions. I tend not to sleep enough anyway, and that didn’t help. After my 40 mile fixie ride yesterday, the sore throat started and didn’t let up. Sinus congestion ensued and fatigue set in. I went to sleep at 8:30 last night after getting everything ready for our trip down to Johns Hopkins this morning for my 3-month GvHD followup appointment. I don’t usually get to sleep until between 2:00 am and 4:00 am.
So, my experiment yielded successful results: I have a better idea of what my body is not capable of. That’s what I was looking for. Of course, I would have liked to have achieved the benefits of my efforts, but I will have to be content with taking some downtime to recover now. My immune system is still very frail.
Starting tomorrow I will begin the slow taper down from the 70 mg dose of prednisone to 50 mg to the end of August. Based on how I feel at that time, my oncologist will determine whether or not to taper me down further still until I am off completely, which will probably bring me to the end of the year. My 2-year BMT milestone will be coming up at the end of October, at which time I will need to be tested per that milestone’s protocol. I still have yet to be reimmunized with my post-BMT “baby shots”. That was supposed to happen this past June, but I flared before that (again), so I have to wait yet another year, at least, before my immune system will be able to tolerate reimmunization.
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