10.20.08
Posted in blog, cancer, gvhd at 5:26 pm by 1speeder
Today marks the second year anniversary of my BMT in 2006. As I think back to what I was thinking during that time, when I got the news that my cancer came back for a third time and was again at Stage 4, and that the only possible cure was an allogeneic BMT, I was hopeful. I was dying and didn’t know what to expect, whether I’d be alive six months later or not. But, two years later, I am still here. The one person primarily responsible for my survival is my sister Laura, who donated her bone marrow two years ago, which lives inside me and has killed my cancer. To date, as far as we know, there is still no evidence of my original cancer within.
It’s been quite a taxing chore for me to keep up with controlling the cGvHD that has been unleashed upon me, but with the help of Dr. Bolanos-Meade and Viki Anders from Johns Hopkins Hospital, Dr. Sokol at the University Medical Center of Princeton, Dr. Hathaway, my opthalmologist, and Dr. Lacava, my PCP, my wife Deb, and my physical therapist, Melissa, I’ve been able to get through two tough years of dealing with this crazy autoimmune disease. I know I still have several more years to go before my body adjusts itself to my new immune system, but it’s something I can definitely endure. Life goes on!
Permalink
10.08.08
Posted in blog, gvhd at 4:44 pm by 1speeder
I haven’t posted an update on my cGvHD symptoms in a while, so here it is. It should be noted that my daily prednisone dose dropped from 50mg to 30mg last Saturday. My BMT oncologist, who also monitors my cGvHD, has been tapering me off prednisone at a rate of 20mg per two months. My next expected taper will be in December.
Eyes - Within the last two weeks I’ve noticed that eyes are starting to get drier again. Chronic dry eye will be permanent for me. Every time I go back on prednisone, this being my second time since my BMT in 2006, my eyes feel better. Not only are my eyes drier, my left eye always drier than my right, but prolonged viewing of a computer monitor or TV screen makes my eyes more blurry with more discomfort. More frequent use of artificial tears becomes mandatory.
Skin - My skin has also become drier. Dryness has always been inversely proportional to my prednisone dose. More frequent total-body application of skin cream is mandatory, and is always a nuisance to me (as is everything else I have to do because of cGvHD).
Nails - More frequent splitting and “hangnails”. My fingernails are usually worse than my toenails, probably due to the fact that I wash my hands a lot during the course of a day (an immune system deficiency countermeasure). This means more frequent applications of Sally Hansen Advanced Hard As Nails, usually two coats twice per week.
Breathing - My lungs are scarred up. I first noticed it two weeks after I finished radiation therapy in August 2004. I did a night patrol ride at the 24 Hours of Allamuchy Endurance Mountain Bike Race three weeks later and it was rainy and humid, which is often the case on that weekend every year. Since then, nothing has helped improve my breathing except prednisone and chemotherapy. So, as I taper off the prednisone, my breathing gets worse. And it’s worse when it’s humid. I don’t think this will ever improve. Since 2004, my pulmonary function has been tested numerous times, I’ve consulted several pulmonary specialists, and have been put on several different medications. Nothing has resulted in any improvement. I’ve taken it upon myself to keep my lungs in tip-top shape with vigorous cardiopulmonary exercise, such as mountain biking, fixedgear cycling, and martial arts.
Fascial tightening - Last winter, my fascia tightened up so badly that even doing things associated with relaxation, such as sleeping and sitting in a couch, caused me pain. Starting on prednisone helped relieve the tightness and with the help of Deb, with her yoga expertise, and Melissa, with her physical therapy expertise, I was able to loosen up. While I haven’t noticed any fascial tightening recently, it is very possible that it could return. Maintaining my daily stretching exercises is crucial to warding off a retightening of my fascia.
Permalink
10.03.08
Posted in blog, cycling, gvhd at 11:22 pm by 1speeder
My prednisone dose dropped from 70mg in June to 50mg two months ago and, as of tomorrow, I’ll taper again to 30mg, which I’ll stay on until my next followup in December. Both Dr. Bolanos-Meade and Viki Anders, who manage my cGvHD, think that I’m still responding very well and my progress is good. When they looked at my back, they were alarmed that there was a strange color pattern that looked like I had been wearing cutoff shirts in the sun, which caused tanning down my shoulders with a pale untanned section in the middle of my back. I never noticed this before, but I never see my back. The only thing that I could think of that described what they were seeing was the effect of wearing a Camelbak when I ride my bike. Later at home, I saw the outline of my Camelbak on my back. What struck me was how delineated and symmetrical the outline was. Despite wearing jerseys when I ride, my skin still tans underneath them, except where the Camelbak provides an opaque barrier.
I thought I was going to have more testing and such, being that I was under the impression that this appointment was going to include some of my 2-year post-BMT testing, but that wasn’t for today. That will be scheduled for December when I return for my next followup and will include a CT scan.
I didn’t get much sleep last night, as usual, and when I got back home, I was so tired from the driving that I promptly took a nap. I didn’t feel quite right yesterday, so I didn’t do a ride, thinking that today I wouldn’t be up for a ride. But, since my mileage this week has been fairly low, and I don’t feel like I got enough in for the century ride this Sunday, I did a 28-mile loop on the fixie after my nap at 5pm.
Permalink
09.24.08
Posted in blog, cycling, gvhd at 11:48 am by 1speeder
Yesterday, my goal of reaching $500 in donations for the Bike MS NYC ride was met. (Thanks, Kevin!) I just wanted to again say “thank you” to all of you who donated to this wonderful cause. Many of us are affected by, or live with, fatal or chronic diseases, or know someone close to us who is, and the reality of it really hits home. I am grateful that I can ride the bike, and I do so and put a lot of effort into it because it benefits me in my own situation, but it’s the donated money that really helps make a difference.
The two other guys who will be doing the ride with me on 10/5 are Johan and Rogelio, who also did the last two century rides with me this month. The Bike MS NYC ride will be our third century ride in this monthlong series. What’s notable about these guys is that they are hardcore singlespeed mountain bike racers, not roadies, and they have been ubersympathetic to what I’ve been going through. It’s been a real pleasure to ride with them. And these century rides are really helping me get back into shape so I can do what I like best, mountain biking!
My truck, a ‘95 Isuzu Rodeo V6, has been dead since 9/7 when I drove back home from Johan’s house after we rode the NYC Century. My power brakes also decided to die on my way to Johan’s house the night before the ride when tropical storm Hanna passed through. The drive home without power brakes wasn’t such a big deal, although I don’t recommend it unless you have a manual transmission. So, the starter had been acting up for most of the year, sometimes not starting at all and sometimes after a couple of tries at the ignition. Usually, I’d just do the job of replacing the starter myself, but it’s a little more tedious than what I have time for these days. Viraf came over to push the truck so I could push start it out of the driveway. (Obviously, without a working starter, you can’t start the engine unless you push-start it.)
I never really noticed that the road out of my driveway in both directions is slightly uphill. That is, until we tried to push my truck out of the driveway. We couldn’t push it fast enough up this ever-so-slight incline to start the engine. Viraf said he didn’t think my truck was that heavy! We could have got it started if we had one other person to help push. But, pushing the truck back down the road backwards and doing a reverse gear start worked. The truck hadn’t been started in over 2.5 weeks and smoke billowed once it started up. Once started, I was able to bring it to the shop. Thanks, V! I would have brought it to the shop earlier, but I couldn’t have gotten the engine started without someone to help me push it. I packed my bike in the back and after dropping off the car, I took a nice, leisurely bike ride home.
I have to drive to Baltimore next week for my 2-year post-BMT check up, which also coincides with my 3-month cGvHD follow-up with the GvHD team. Hopefully, I’ll check out OK and my prednisone dose can be tapered down some more.
Permalink
09.08.08
Posted in blog, cycling, gvhd at 12:02 pm by 1speeder
Hurricane Hanna blew through on Saturday night leaving a very nice sunny day on Sunday. The high was about 83 degrees with a cooling breeze. Humidity was very low. I was fine with just sunscreen and typical cycling garb. Our group consisted of Andreas (A-train), Johan (Black Bean), Rogelio (King Bean) and me (Cyclops).
Yesterday’s NYC Century was the first time I rode it on a fixedgear bike (photos). Not only was it tougher because of that, but this year was my worst in terms of physical conditioning due to being chronically sick since last winter and from being on high doses of immunosuppressants for months. I am currently still on 50 mg of prednisone. So, I knew it was probably going to be the toughest of the five years that we’ve done it. I also used a taller gear than I’ve ridden in the past, 64.2 gear-inch (44Tx18) vs. 61.1 gear-inch (36Tx16). I intentionally dropped down a gear for this ride as well, from 46×18.
Since having chronic GvHD for the past two years, cramping has always been pretty bad for me and yesterday my quads and calves were cramped for much of the ride. On a fixedgear bike, you need to use your leg muscles to slow the bike down as much as you need them to accelerate the bike. Being that the NYCC is an urban ride, there is a lot of slowing down and speeding up, on the order of hundreds of times, so on a fixedgear bike you’re doing about twice as much work right there. Descending hills on a fixie requires a lot more control of one’s speed much like an 18-wheeler requires engine braking control to descend a steep downhill. On the fixie, that’s even more exertion on the legs. And the obvious workload on the fixie is that you are pedaling the entire time. There’s no coasting, ever, so there’s no chance to rest the legs and no chance to stretch the legs on the bike. This is makes it tough for someone like me with all the health issues that I have. But for me, riding fixed has always been about gaining the strength benefits of a much more difficult ride for rehabilitative purposes as an always-relapsing cancer patient. I saw four or five other fixers out yesterday, one which was also riding an IRO.
According to my GPS unit, it was 3,120 feet of climbing, 8:08 moving time, and a 13.1 mph average, which is most likely the slowest average speed so far (did I mention that I was hurting this year?). Since I carry my GPS unit in my Camelbak, the moving time and average speed values are skewed a bit. If I had a bike computer on my fixie, which I don’t, at rest stops the computer wouldn’t be registering any movement. But, since my GPS is on me and not on my bike, it’s registering movement as I walk around getting food and water and mulling about, and that pulls my “average speed” down as well. In contrast, Andreas’ computer had a 7:45 moving time.
The course this year was much more “rugged” than in previous years. There seemed to be many more people fixing flats. I had 23c tires on my IRO this year too, but I’ve done this ride so many times that I know what to expect. Being a mountain biker actually helps a lot on this ride, since there are a lot of stairs, curbs, greenways, dirt paths, broken glass, and bridge ramps. Usually, I ride a more rugged 32c tire on my Zion singlespeed.
Because of the U.S. Open at Flushing Meadows this weekend, the course was routed differently. It’s always different every year anyway. We popped out at the Kissena track on the opposite side than usual. And the “zig-zag” bridge from Randall’s Island to the Bronx was added back in this year. I think last year the Triboro Bridge was taken out, but this year it was put in again, however, we had to walk across the entire bridge because of all the construction and going up and down all the stairs.
We saw two unicyclists in Queens who eventually ended up doing the 55- and 75-mile routes. One unicyclist had a 36″ wheel. We saw him at the finish and chatted with him; his saddle was as high as my chin.
Permalink
09.04.08
Posted in blog, cycling, gps, gvhd at 6:22 pm by 1speeder
In the past week I was able to get three good training rides in on my fixie to prep for the NYC Century this Sunday. Two and a half weeks ago, I was still sick with a sinus infection and coughing up a lot of sputum. I wasn’t sure if I was going to get over it in time to get enough training time in, but I was able to get 62, 68, and 76 mile rides in with little spinning/recovery rides in between.
Yesterday’s 76 mile ride was the longest ride I’d ever done on a fixedgear bike. When I left the house at 10:30, it was so overcast that my GPS had trouble acquiring satellites. Not too long afterwards, it started getting pretty hot and sunny. As someone dealing with cGvHD, I have to be careful about being out in the sun too long. While my skin seems to be a little less sensitive to sun than it was last year, I’m still sensitive. To prepare myself for being outside for several hours while riding the century, I figured that tanned skin would fare better than untanned skin, and I’d be less apt to burn. Last year, I seemed to fare pretty well, but I was totally paranoid the entire time. And it was sunny and hot last year. So, for the last two weeks, I’ve been intentionally going out in the late morning with my exposure to the afternoon sun spanning through to as late as 3:30. I got tanned each time with no real adverse effects that I can see or feel. (One of the scary warnings I received right after my BMT, when the possibility of acute GvHD was high, was “explosive GvHD”, in which a sunburn could lead to death within 14 days.)
As it turns out, this Sunday might be wet and rainy with hurricane Hannah hitting Long Island by early Sunday morning. I probably won’t have to worry about the sun, but if it’s rainy, there’s another GvHD related risk that might crop up. Pneumonia. Also, I was hoping to ride my fixie, but it only has one brake, the front brake, that I use only when I can’t stop the bike in time with the pedals in typical fixedgear fashion. But as my condition with GvHD persists, I try hard as possible not to crash or injure myself since this can lead to a GvHD flare-up or other bad immune system related problems, such as organ failure. So, I might default back to riding the Zion, which I rode the last two years. It’s got disc brakes and is a better “bad weather” bike.
Permalink
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.
Permalink
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.
Permalink
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.
Permalink
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.
Permalink
« Previous entries