April 12, 2016
On April 10th, I managed to force myself and my old bike through the short course at the Eroica California vintage bike ride in the hills above Paso Robles. www.eroicacalifornia.com
It had been three weeks of constant challenge against the odds (check earlier posts), even right to the starting gate. Waiting next in line to get my ride book stamped and take off, I noticed that my old front Panaracer tire had blown out a sidewall. A big aneurysym just cleared the forks on the left side with the broken tire sidewall threads wacking the fork on each revolution. Repairs from last night had yet to be road tested: the problematic axle nuts, the crank cotter pins, the weak seat post, and now this. Nausea, spinning head from my morning drugs -- I felt the least healthiest I have ever been in my life, like a train wreck without even yet leaving the station. Looking back at the photos, I look like a wreck. Photos at www.shaunwillson.com. Check my blog and Facebook link.
So I figured I would get my ride card stamped, ride under the starting banner, maybe make a mile and come back. I had given this gig all the energy and time I had left and I was OK just calling it good. Mentally and physically I was numb as a stone. But after a mile the tire didn't blow. After the first long hill, the crank held. So I figured the worst case scenario, a tire blowing on a long downhill and me hitting the pavement at 30 mph, and I realized that it still wouldn't be as bad as open heart surgery or three rounds of chemotherapy, so I said to hell with it and rode until something disintegrated. And nothing did, other than my legs.
The ride itself was beautiful; steeply rolling hills through olive orchards and vineyards, classic pastoral stuff. Glorious and meticulously maintained vintage machines stretched out in lines in front and behind me. The odd rider's group on the roadside every mile making repairs. (I never did!) I cannot imagine trying any harder to get to and through this event, making this dream come true. It was an inspiration to be part of it in any sense, much less finishing a route.
Thank you to all family and friends who helped fix, patch, and cajole my bicycle and my body through this thing. If I still didn't feel so sick I would be walking in the clouds right now, so forgive me for this brief post about an incredibly important and epic event from my bucket list.
And tomorrow morning it is back to the doctor, and I will never tell him a thing.
April 9, 2016
If you want to be swaggeringly hip-retro-vintage on a bicycle, choose a ride with some rare or obscure detail, and better yet, let the idiosyncracy be something potentially catastrophic. Then you are dangerous cool, which is much better than regular cool. I did that. I chose a bike with '60s French Huret wheels held in place by... giant chromed wingnuts. They really do look fabulous, but then there is a reason wingnuts never even made it past disco.
Yesterday: The light turned green to cross, four lanes of traffic stopped each way just outside of Santa Rosa, CA. I stood on the pedals to get a move across the road, the rear right wingnut slipped, the rear wheel jammed full force into the frame, and I hit the pavement as hard as I could. In front of a packed audience. So I did what you all would probably do and quickly and nonchalantly (in my mind) picked up the bike and walked back over to the sidewalk, acting like I didn't just hurt myself really bad. The truth is that I have road rash from my calf to my butt. Funny that my first thought was "Wow, my platelet counts must be good enough to keep me from hemorraghing to death right here in front of every body -- as if the crash was not spectacle enough." Reality was: I now have a really banged up leg, I am behind in my training, I generally feel like yuck, and my bike now needs repairs... and we are leaving for the Eroica ride in the morning.
So I cut back the ride to 20 miles, just enough to keep from stiffening up, and took my machine and bleeding leg back to my make-shift bike shop in brother David's garage. Two hours of repair later, aided significantly by Deborah and my mother Elfriede, and my ride was actually better than before.
But wait... there are still not enough challenges! A visit with my doctor on the way out of town this morning all but confirmed that I have graft vs. host disease, essentially my new immune system attacking my skin and digestive system. So now I have added steroids to my medicinal cocktail to combat the rash and mind-altering itching -- and for nausea, a marijuana derivative. It has come to that-- I am now both a marginal juicer and stoner.
And the weather for Paso Robles this weekend is rain.
But we made it here in our fabulous Airstream to the Paso Robles RV Ranch, where we will spend the wet weekend. I have already hung with a couple of bike builders from Oakland and their incredible machines. I am just trying to make it to the starting line. Check my website and blog at www.shaunwillson.com.
April 1, 2016
In the running community there is a notion that speed is not as important as finishing. When all else is gone, - energy, hope - the idea is to simply keep moving: The mantra is: Relentless forward motion.
That is where I am. Improvement seems to be happening at the pace of geologic time. And although I can do slightly more than a week ago, I don't feel one wit better. This feeling of having an infinitive hangover is slowly putting me in a daze, but it is an interesting self-experiment on how persistent discomfort affects one's psyche.
So yesterday I finally moved at a pace greater than a walk, splitting four miles into a walk and jog followed by a very light weight routine. Beginning to run again is a very big deal. But today, feeling utterly crappy in a cold morning mist, I breezed through a 20 mile bicycle ride on my '65 Puch.
One can feel horrible laying in bed, or one can feel horrible listening to the birds along the trail....
Even with the persistent nausea, it was a good ride. My $50 Craigslist bike is ridiculously smooth with its steel lugged frame and a long rake. The ancient Huret derailleurs, absent of the slightest plastic component, behave with a solid no-fuss click every time. It is easy to become hypnotized by the silent speed of such a well-oiled machine. With mechanical work complete, I am now focusing on period embellishment and accessories, scrounging them for cheap or making them myself. There are a zillion things I can't do well, but with a bicycle, inspiration comes easy. It is such a pure organic machine, all screws, washers and loose bearings -- all stuff that needs constant attention. And then there are the subtle details - like the patterns on the aluminum handlebar stem and frame. Making such a thing move again, on a slow spring morning, that is the magic that keeps me moving.
March 28, 2016
I had a choice: Either feel lousy and stay in bed or feel lousy and do something. Doing something doesn't make me feel worse so... now I am walking about four miles per day. As of yesterday I am off the IV and only on oral medications - lots of them. Still, I am weary of feeling disconnected from the world, and for me that is intolerable.
So I decided to commit to something - a challenge that is inspiring and classic. I am going to attempt the California Eroica vintage bicycle ride in Paso Robles on April 10. www.eroicacalifornia.com That is in less than three weeks. I have not ridden a real bike outdoors in months. I have not yet been able to run because of the IV port in my chest. And I have to do the thing on a vintage bicycle in vintage garb. OK, so what if I fail. The doctors won't approve so I won't tell them. But I have been dreaming of this ride for a year, have already restored a fabulous 1979 Puch (residing impossibly now in our basement 2000 miles away), and know what this whole gig requires. I have less than three weeks to pull this together. Think about it like this: On the anniversary of my open heart surgery, and only 46 days following a bone marrow transplant for a worst-case leukemia, let's say I fail at my attempt of a vintage bicycle ride through the hills of coastal California. There are only six of these events in the world. I might not live to see the one next year. As far as I can tell from my research, I can't find anybody so handicapped attempting this kind of thing so soon. It will be a magnificent epic failure. But, but, but... what if I make it? What a story that would be, and the measure of a life lived is in the quality of the stories we can tell about it.
So yesterday I acquired a vintage Austrian -made bike from about 1965. It is primitive but everything works. From now on, I will spend my days throwing my magic at it, making it roadworthy (and beautiful, of course) and increasing my stamina and strength training.
Thank you to all who have supported me so far in this horrible adventure. I just feel like now is the time for me to start giving back, even if it is only maybe as an inspiration to others.
More details at www.shaunwillson.com
March 10, 2016
Back home to our rolling Airstream condo, Tater. Parked in my brother's driveway, a mansion would not be better. The weather is cold, windy, and rainy - a typical Northern California winter. But at least I can now feel weather, and it is fabulous. As for Tater, think an upscale London flat in miniature, solar powered and self contained, on wheels. Or think a mobile giant foil-wrapped baked potato.
Fatigue is substantial, and there are numerous other minor effects (digestion malfunctions, muscle pain) of having my body totally trashed for weeks, but I can get around fairly well. Apparently the doctors are still marveling at my condition, getting the maximum dose of the nastiest chemotherapy out there, plus a stem cell transplant. Outwardly they remain poker-faced. I honestly am too tired of it all to care, which has the benefit of releasing me from worry. Whatever. My immune system is still compromised, so I am allowed to be outdoors as much as I want but have to avoid crowds of people. What a sacrifice. As soon as this weather clears, I will follow those instructions and continue my physical rehab --- outdoors.
Tater: 19 foot Airstream Bambi CCD Signature Series, towed by a Ford 4x4 Powerstroke Diesel. Everything I legally own is on those six wheels.
www.shaunwillson.com
March 8, 2016
I am stunned. I leave the hospital tomorrow. This is about ten days ahead of schedule. In two days my white blood cell counts rose to their highest level in a year. The doctors, in their practiced understatement, said this was a bit unusual and has no affect on my long term prognosis. I was told not to celebrate. What!? Clearly those are the words of folks who have never been on my side of the IV bag.
Of course I know how uncertain my future is! But who wouldn't think this is fantastic!? Tomorrow I get to feel wind, hear birds, and smell ... anything. The concerns of the future can wait for a few days because I truly did not expect to even see this one.
March 6, 2016
Today is known as the "nadir", the estimated date of when I should feel the worst. Instead it was just another day. Two items of interest though: (1) extraordinary bone pain - which pleased the doctors- because it meant that the donor cells have engrafted. This is a VERY big deal, and is notably ahead of schedule. (2) My neutrophil counts are at a value greater than zero, proving that the new marrow cells are establishing themselves and dividing.
Because of these developments, there is talk of an early discharge from the hospital. Plenty of pain medicines will make the next few days tolerable and have the added benefit of putting me to sleep. In sum, a very good day. Managed to shuffle one mile today on aching legs.
March 2, 2016
I'm OK, the medications are tackling the majority of side effects, but the fatigue is extreme. One of my doctors created a simple graph to show where I am in the process. Check it out on my March 1 blog post at: www.shaunwillson.com
February 27, 2016
A much better day. Steroids have me jittery but I managed to shuffle the halls today dragging around the IV pole and also an appetite returned -- somewhat. I am so swollen that there is nowhere to put food once I swallow it. I live in my pajama bottoms. Haven't seen the exercise bike in three days. Apparently style is not a consideration around here. Still working on glitches with this fundraising platform-- pictures and links are not loading correctly. Hopefully by Monday-
February 27, 2016
Yesterday was miserable. A few hours after the transplant, my immune system went into a reaction: Fever, shakes, and the worst headache I can remember. My 20+ lb. swollen body turned red as a sunburn. I could barely speak a sentence. I never left the room or changed from my pajamas, and it was not because I didn't feel like it. I was just too sick.
Today is better. The doctors have tuned in the medication to subdue my body at war. I don't feel great but I was able to walk two miles, slowly.
February 25, 2016
Today is DAY ZERO. That means that I received my stem cell/bone marrow transplant today. It is simple, entertainment-wise, really a non-event. The infusion itself only lasts a couple of hours. An nasty looking brownish-red IV bag of the donor's cells are simply fed into my bloodstream and they somehow now where to go and what to do. Of course this last part takes months, and lots of weird things are the result, such as graft-versus-host disease (not good), and the need to take all my childhood immunizations again after a year. But in the meantime, I have no real working immune system, which means that the next few weeks will be unpleasant and fairly dangerous.
The folks here at UCSF have done a good job of mitigating side effects, or else I am just lucky, but I have made it through the first week relatively intact. Occasional nausea and considerable fatigue are manageable so far but the chemo-induced brain fog is debilitating and the accumulation of fluid weight (1-2 pounds per day) makes me unrecognizable and uncomfortable. I have no illusions about next week though, and it is predicted to be the week straight from hell. We'll see, and I will let you know. More info is on my blog at:
www.shaunwillson.com
February 19, 2016
The 11th floor of the UCSF medical center looks like a typical hospital, except for one item: The fabulous view from the solarium room out across San Francisco and the bay. After three days here I have noticed the room is usually empty and contains.... a stationary bicycle! Salvation today was spinning that thing while pointed out across the city, plugged into my earphones, lost in another world. Meanwhile, the chemo drips into my arm from the adjacent IV stand. Today is chemotherapy rounds four through seven of sixteen, and I can just feel it now beginning to zap me. My small world will get extraordinarily intense soon, so I am cramming the last bit of physical accomplishments in now. An hour on the bike, two miles of walking the halls and things are woozy. But I am still just well enough to break a sweat. According to the doctors, with whom I agree, the idea is to go into this thing as fit as possible. Why am I then the only one here doing this? Are we treating the disease or the patient?
Well, My bike shorts are hard to miss on these hallways. The good staff here now knows where to find me. If word gets out maybe we will eventually have to vie for time on that bike-
