doing everything the hard way…
King Bean brought to our attention the Singlespeed-a-polooza presented by Darkhorse Cycles on May 17. It sounds like fun. Mark your calendars!
We got to see disc 1 of the Zappa Plays Zappa tour this week and highly recommend it, if you’re a Zappa fan. This weekend we’ll check out disc 2. Here are some video clips of the tour and info about the players.
Google released its flu trends tracker recently. “Google Flu Trends uses aggregated Google search data to estimate flu activity in your state up to two weeks faster than traditional systems.” The lead engineer for the project was interviewed by Matt Frei on BBC World News yesterday, where he stated that the data from Google’s search engine results in faster results than that put out by the CDC by about two weeks.
Johan posted a video of me from the ride last Sunday at 6 Mile Run (here’s another video). He’s been using the helmet mount lately and racking up a bit of video. For the last two years, my only video has only been shot while handholding the camera in one hand and holding the handlebar in the other. Because of this, I’ve only been able to record video during parts of the ride where I can get away with using only one hand (or no hands) on the handlebar. Basically, that means only during flat sections. Recording climbs and downhills was impossible, because that requires two hands on the handlebar. But now that I have the same helmet mount that Johan has, courtesy of Jennifer, I can record some better hands-free video!
On my ride today, as I was heading west through Monroe and about to cross Applegarth Road, I heard what sounded like Blue Thunder. I looked up and saw a military helicopter with a long gun barrel in the front. I don’t wear my prescription glasses when I ride my bike, so I couldn’t really determine what kind of helicopter it was, not that I’m an expert in military avionics, but it didn’t look like a Blackhawk. It was smaller and had that single big gun on it. It aggressively circled the housing development across from the school one full revolution. For a moment, I was seriously concerned that something was about to go down and I’d have to haul ass out of there. Across the street from me was a road construction crew and a police officer. (There always seems to be a police car assigned to watching over road construction crews here in NJ.) We were all looking up at the helicopter. The officer gave me a quizzical look with a shrug, as if to say, “What’s that helicopter doing?” The helicopter was hovering over the home construction site as I went over to the officer to ask her if she knew what was going on. She didn’t know. Then the helicopter headed west towards West Windsor.
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!
On Monday, I was reminded of what poor condition my body is in. After doing a workout that included some crunches (no twisting), round kicks from a standing position (no movement), shadow boxing, and dumbbell lifting, my back almost completely “went out”. After the workout, which was not very strenuous by any means, I was on the computer for an hour, and after that, my back out. I couldn’t straighten up while standing without a lot of pain from my S-I joint near my lowest disc on the right side. I have to remember to warm up properly and cool down properly with ample stretching. I had to limp around, bent over like an old man, using a kali stick as a cane.
The last time this happened was when I was doing my Rituxan treatments in early 2006 following my high-dose chemo treatment (December 2005). The night before I went to JHH for my infusion, I jumped down from the kitchen counter after retreiving something from one of the upper cabinets (I don’t use step stools like I should) and I felt that “weak feeling” in my lower back. The feeling is something like when the lower half of my body doesn’t feel quite connected to my upper half.
Only today did I feel like testing my back to see how it fare on a bike. I had planned to ride the Bucks County Covered Bridges metric century ride on Sunday with Steve and I didn’t do much of anything since Monday, except for walking slowly to Shop-Rite yesterday. I took the fixie out for 16 miles and didn’t push myself, but my back felt surprisingly fine, although I didn’t encounter any real hills. I think I should be fine for Sunday if I gently stretch my back every day and don’t injure it again.
The past couple of days I’ve been feeling a minor scratchy throat that comes and goes, pressure in my head and sinuses, swollen or heavy eyes, a running nose, a persistently sore and stiff back, and a general feeling of being slightly run down and fatigued. I’ve been sleeping more too. This could just be the result of my body responding to another prednisone taper (50mg to 30mg), which started last Saturday. The first week or so of a taper is the most dramatic, as far as my body’s response goes. These symptoms could also be partly due to my body recovering from the Bike MS-100 last Sunday.
Regardless of all that, I’ve been riding every day, but nothing more than 25 miles on the road. Tomorrow, is an all-day 30 mile epic MTB ride in Jim Thorpe that I was hoping to join, but I’m just not feeling healthy enough at this point to do an all-day ride. Besides, the 9-year old Fox Float RC shock on my bike seems to sag and bottom out when I sit on it, despite it having 70 psi of air pressure. I gave it to Greg earlier this year or last year to overhaul and when I got it back, I never rode the bike until I tested it out yesterday. I haven’t had a chance to check it out.
Today, I took the errand bike out to Assunpink to scope out the singletrack and jeep trails. I’ve always just ridden the paved and dirt roads through the park, but never the trails. It ended up being a four hour ride. Turns out, the bike was not suited for what I encountered. I needed something resembling a MTB. The trails had a lot of trees and logs crossing over, some steep climbs that road gearing was too tall for, and sand that required fatter MTB tires. Plus, the pack on my rack was loaded with a lot of stuff that made the bike top-heavy and, since it’s really a touring bike, the bottom bracket drop was so low that the toe-clips kept dragging in the dirt when I wasn’t in the clips. But that’s OK. I was just out exploring and taking it easy, although I was doing quite a lot of pushing my bike. It seems that the park system’s answer to trail maintenance is to dump sand every where there is trail erosion. There was a lot of sand. Sand, which is nearly impossible to ride through with skinny 1-3/4″ tires. These trails are popular with equestrians and I ran into a couple on horseback on one trail.
Next Sunday, we’re riding the Bucks County Covered Bridges Metric Century, which is supposed to be one of the most beautiful rides in the country this time of year. Thus continues our century-ride-every-other-week schedule, although this will be a metric century (100 km), not a full century (100 miles).
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.
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Yesterday was the Bike MS-100 ride. Johan got sick a couple of days ago, so it was just Rogelio and me. On Saturday, I looked at the course map for the first time and saw that most of the ride, 70 miles of it, was along the Palisades and up in Rockland County, both of which are very hilly, so I ditched my plan of riding the fixie and decided to tune up my road bike. I hadn’t ridden my road bike in two years. Only the first 30 miles of the ride was around Manhattan and hill-free. My plan for these three century rides these past five weeks (the NYC Century, the Pumpkin Patch Pedal, and the Bike MS-100) was to do all three on my fixedgear bike. I knew immediately, after looking at the course map, that riding fixie on this ride would be way too hard for me at this point, being on high dose prednisone for the past five months. I’m from southern Westchester and I’m familiar the terrain through the Palisades and Rockland County. Had I ridden the fixie, I wouldn’t have been able to climb most of the hills. There was one fixer I saw doing the 100-mile course. He always came in after us to the rest stops and about 40 minutes after we arrived the finish line. Still, major kudos to that guy. That was a tough course to ride on a fixie.
It started raining hard when I reached Elizabeth on the NJ Turnpike on my drive into NYC. There were a lot of cars with bikes on trunk racks driving up the Turnpike. It was going to be a long cold and wet day on the bike. The start area was at Pier 94 at 55th & 12th, but I ended up parking at 82nd & Amsterdam thinking I’d find parking there. Rogelio parked at self-park garage near the Lincoln Tunnel for $18/day. I saw the garage when I emerged from the Tunnel, but dismissed the idea of parking there, despite the rain. It would have been easier, and drier, to get ready there, as Rogelio later mentioned. By the time I was up in the 60s, Rogelio called and said he was parking in that garage. By the time I rode down from 82nd Street to 55th Street for the start, my shoes were already soaked.
At the next rest stop, the 100-mile riders were treated to turkey and ham & cheese sandwiches, along with all the other stuff set out. What’s noticeably different at the rest stops on this ride from other century rides are the volunteers. They thanked us for being there and doing the ride while they handed out food and water. They topped off our water bottles from gallon jugs of bottled water. There were no coolers full of Gatorade at any of the rest stops though. At the rest stop in Rockland County, girl scouts walked around handing out Fig Newtons and cookies. Obviously, the volunteers at this event had a greater dedication to helping the riders meet their caloric needs.
We really enjoyed the ride, despite being cold and wet most of the day, and we’re going to do it again next year. You can see the photos here. More GPS data is at Rogelio’s GPS page and his Google map of the ride. Here are the photos from Brightroom.
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.