Well, I slept like a baby last night, so mission accomplished! I barely remember the nurse coming in at 2 o’clock in the morning to take my blood and check my vitals. I am pretty sure that’s the first time since being here, that I’ve slept through the night.
Today, I rolled out of bed a little fatigued and a little nauseous, so the nurse brought me in my usual shot of Zofran and injected it into my IV. About the time my head stopped spinning, I checked my Facebook and saw a really cool shout out from my Zia Velo (bike team) team director and buddy, Shane. There was a big race over the weekend, and it was really nice to know that they were thinking about me while I’m in here trying to get better. It’s amazing how much these little encouraging notes from home make a difference. I’m definitely not depressed. I’m not in here breaking down mentally. At no time here have I felt sorry for myself because I know I’m here on an amazing opportunity that people would die for! With that being said, it’s hard not to miss the bike or the outside air, and all those little things that make life so freaking awesome! It’s amazing to get a boost! In here, you definitely need a boost. I’m spinning on a bike, in front of a beautiful lake on a regular basis and walking laps in the hallway, so exercising can be hard mentally because you get bored. Twenty laps around the hallway is a mile, so I try to get two to three miles a day. Tell me that doesn’t get old! Sometimes just knowing people are at home thinking about you is all the difference you need.
Also, this morning I got a double shot of awesomeness, and found out that people I have never met we’re also cheering for me at Millennium Park. A few weeks ago, I mentioned I met Susan, a photographer at the bean that takes pictures for her Facebook site “Jumping at the Bean”. Susan is also a stem cell transplant and leukemia survivor. Since meeting her, she has been following my journey. Today, she had people jumping and holding signs while cheering me on. I really thought this was awesome, and once again, it gave me a boost like no other! It gives you the whole new faith in humanity to see random strangers doing something so positive for a person they have never met!
Also, for today’s stats: My WBC and Absolute Neutrophils are still too low to count (TLTC), when they actually do start going up, they go up quick. I can be out of here that same day they immediately go up, so come on numbers! I just need to get to a 1.0! My platelets are 49, so I’m still 29 above needing a transfusion there . My Hemoglobin is 9.6, so I am 1.6 above a transfusion. These are good numbers and I’m thinking another good day!
The days now are all just kind of running together and a lot of the same routine are just used as time killing, so I’m not going to really get into it, except I will say that on my second walk, if there was a Strava “King of the Mountain” segment created for walking twenty laps around this hallway counterclockwise, I would have nailed it!
You’ve probably noticed that on a lot of these days here, I’ll talk about my day, but I’ll go off topic focus on a subject that I feel has helped me rise to beat MS so far. Today, I’m going to go back to the beginning to talk about the thing that I feel has saved me like no other from this disease progressing as aggressively and as severely as it has tried to. My approach to fighting this disease happened by mistake.
My Approach to the Disease
A quick background of how I found out I had MS, and how this became my approach to fighting it. Well, before being diagnosed with MS, I had been riding a mountain bike pretty religiously. I did a lot of mountain bike races, but was never the best or had ever won a race. I would get the occasional podium finish, but but probably an average 4th or 5th place finisher. I raced enough to get sponsorship from Crazy Cat Cyclery, a bike shop in El Paso, that a few of my buddies rode for. I raced the New Mexico Off Road Series a couple times in a row, and had a couple 2nd place finishes in the series overall in Category 2 (Sport). I love to mountain bike, and I’m pretty good at it, but Cat 1 (Expert) racing is totally out of my league, and those guys are from a different planet!
In April 2011, I was doing a training ride with my buddy, Ray Frias, in beautiful Cloudcroft, New Mexico. People who know me now know I’m obsessed with Cloudcroft, and I look for any excuse to get up there. I love the high altitude and beauty of the place that makes training and suffering a whole lot more fun. During our ride, I noticed a grey blur in my right eye. It wasn’t anything too bad, just kind of annoying. My vision was still clear, but it looked as though I had a smudge on my sunglasses lens. Anyway, long story short ,within about a week, I could barely see out of it and by two weeks my vision had gone totally black in my right eye. I’m not going to get into the long story how it went from that to being officially diagnosed, but that’s where it started.
With vision totally gone in my right eye, I totally lost my depth perception, which for mountain biking is unbelievably crucial. It is especially needed on the fast, bumpy downhill sections, or one mistake can be really bad. This pissed me off. I’m not going to lie, and say I didn’t do the “why me”thing, because that’s exactly what I did. Why me?!!! I’m out trying to live healthy and do the right thing, and they tell me I have MS? When I lived in Montana, I knew a lady that had a MS. I was seeing her and what it did to her, and it scared the crap out of me. I had only been married for a year. I had been a PT instructor at the Border Patrol Academy and I lived on my bike and at the gym. I was pissed off. I didn’t go into a deep depression, but I was pissed. I am not saying there wasn’t tears of sadness and shock, but this was unbelievable!
The one bit of hope that the doctor’s office was able to tell me was that there had been a pretty big breakthrough in MS drugs the past few years that slow the progression of the disease pretty significantly. The drugs were not a cure, but they at least slow down the aggressiveness of the disease. So thus began years of expensive, daily injections and a pill box just like the one in your grandma’s medicine cabinet.
What Do I Do Now?
Everything I read told me to take it easy and not push myself too hard. Don’t over do it! That’s all everything said. That was the big rule for managing MS. I decided like many rules in my life that I don’t like too much, that I was going to break this one. I thought for sure in a year from then, that I was going to be using a cane or wheelchair. I thought I would be medically retired from the Border Patrol and I thought I’d be trying to figure out how I would live with the guilt of being a newlywed and crippled while having to have my wife take care of me. The first round of infusion steroids they ever gave to me, made me feel like I was really sick for the first time in my life. I remember sitting in the backyard trying to throw my dog a frisbee, and being so dizzy and weak, that I thought I was going to throw up.
During this time, I had a set a road wheels that I could mount on my mountain bike so I started riding it like that because I couldn’t handle my mountain bike without depth perception. Just so you know, Ray was still great about riding with me, even though I was so dizzy , and the steroids had my heart beating out of my chest, but he started showing me how to do the local road rides.
I had done a road ride the previous October at Viva Bike Vegas, a 100 mile bike ride in Las Vegas. That day was actually the first real symptom and flare up I had of MS, I just didn’t know it at the time. When I was done with the ride, my skin went numb everywhere like somebody had rubbed Novacane on it. (The doctor I went to see couldn’t figure out what was wrong with me but my MRI’s later show that attack in previously existing lesions.) That’s a pretty big ride for your first road ride ever! It’s extremely uncomfortable on a mountain bike, because they just aren’t made for the long distance. After that, Wayne (my brother in law) had also taken me on a ride in Tucson to the top of Mount Lemmon.
Once again, I did this on my mountain bike, but I had the road wheels on it. At the time, I was a proud mountain biker, and always made fun of sissys. the roadies were. Wayne was all roadie and we made fun of each other for it. Shortly after that trip to the top of Mt. Lemmon on my mountain bike, Wayne sold me his road bike for $100. He sold me an old trek US Postal edition, and it was a great bike to start on. My first road ride ever on a road bike was straight back to the top of Mt. Lemmon. Just climbing Mt. Lemmon in the cycling world gets respect from people. Pros go there to train in the winter time. So looking back now, a hundred mile road ride right out of the gate, and two eighty mile rides to the top of Mt. Lemmon were a big sign of good things to come.
After doing several torturous road rides with Ray, and after the massive dose of steroids finally left my system, he took me to a local ride in town called “The Heater”, hosted by Zia Velo, the big cycling team in Las Cruces. Fortunately, I knew a few of them from mountain bike racing, so already, it was nice to have people that could give me tips on group riding. Instantly, I was impressed, and because I had been mountain biking, I was used to riding under my own power at a sport where I was bigger than everybody else, and that was based around climbing and quick recovery.
In road biking, you learn how to ride in the draft and that saves a ton of energy. I came back the next week and made it even further. What I loved about it, is that it was all out and you pushed yourself until you absolutely cracked and get dropped, or made it to an intense sprint through a pecan orchard at insane speeds. Slowly but surely, I started learning team tactics, and finding ways to make it to the end of the heater. I was blown away with how fast the heater moved, but surprisingly I hung in there for a long time before I got dropped.
I was never close to winning it at the time, but just making it up there was so exciting. I started looking for ways to get into little breakaway groups of the front. In a breakaway, you have to work really hard, because you usually have two or three other people taking turns pulling while you get a short rest. The thrill of getting any one of those riders for the win, was way more exciting to me than actually getting the win myself. For my goal, I was going to try and do as much work as possible, and then take twice as many pulls as anyone else in the group. I loved being the work horse!
Back to Mountain Biking Racing
After a couple months, the vision started coming back in my right eye, and I noticed I was actually now in better shape than before I had MS. I decided to get back on the mountain bike and give it a shot. My first race back, I got a second place in the same races I had previously raced. The funny difference now is that I was faster on climbs, and that’s where I was getting ahead. Climbing used to be my weakness. Now on the downhill, I was horribly slow and cautious, because without my depth perception, I just couldn’t move fast. Before this I was known for my downhill abilities that was my strength.
Since I thought each race could be my last, I was pushing myself into a level of pain I had never before tested. I was riding angry. I would pretend the disease was chasing me. Because I was actually doing better than before I was diagnosed, I vowed I would never use MS as an excuse for not performing. If I showed up to the event, I was going all out. I’ve had to skip a few races that I planned on doing, because of a MS, but if I was having a bad day, it’s just because I’m having a bad day, and not because a MS.
I actually went into first place overall on the standings, and even took a comfortable lead, when I won my first mountain bike race ever, which was arguably the hardest race of the season, at Red River, New Mexico. This course went straight up a ski lift to the top of a painfully high mountain. I suffered that day, like I had never suffered before, but I won. The other guy that I was duking it out with in the series, rarely beat me when we raced head-to-head. Unfortunately, missing the bulk of the season, I didn’t get many throw away races in case something bad happened. If I remember correctly, they took your top seven or eight races.
Unfortunately, for me, I am naturally unlucky. The next race I got a flat tire and broke a chain, even though I was once again in the overall lead. The race after that, I slipped and cracked my frame, but still managed to finish that one in second place, since it was in my hometown. The race after that, I blew my front tire on my rim, and wrecked. The one guy I needed to not win that race won that race. So at that point, he went back in the lead.
It came down to the final race in Farmington, NM at the Road Apple Rally. This race totally played to all my strength. The only problem was I was now on a borrowed aluminum frame that I wasn’t familiar with, and also had a borrowed wheel set, because my equipment had given up on me before the season could end. The wheel set was made for lighter riders, but it was my only option. For the first fifteen miles, I was killing it, and had unusually put ten minutes on the guy I needed to beat.
Of course bad luck would strike again, and the rear wheel got so “out of true” from every spoke getting loose. The rear wheel totally seized up against the frame and my race was done. I remember my buddy William, also a rider from Las Cruces, even tried to give me his wheel from his bike, because he wanted the title to go a Las Cruces rider. William was in third place overall in the series, but definitely the next best rider that year. In the heat of races of the season, the epic battles here between me and William. We would go back and forth beating each other, but like me, he was mechanically cursed. He would always also have a bike problem when he was in the lead. This was a guy that knew my pain, and knew he didn’t have the points to take the series, but would have loved to see me do it. Unfortunately, I was riding a 29 inch wheel, and he had a 26. So my race and my season were done.
Even after William stopped and helped me, and then continued, I think he beat the other guy by about twenty minutes! Liz was awesome racing for the state championship that year, and she had already locked up the series, because Liz was awesome enough to not make stupid mistakes. Being the supportive wife she is, she actually stopped her race, and came and rode back with me in the SAG vehicle. I really didn’t want her to, and I wanted her to finish, but Liz is Liz, and she wanted to be with me. That’s the girl I married.
Unfortunately, mechanicals and bad luck are part of mountain bike racing, so it is what it is and I lost fair and square. I’m looking forward to trying the season again post-transplant, and doing it with little bit more breathing room, instead of having to have every race go well to have enough points. My goal is to win this series before I move into the 40 year old class. Coming back and doing this post-transplant, would be a huge explanation mark to have a real come back!
Zia Velo Cycling
Anyway, after this heart wrenching experience, I knew I knew it was time to do something new. I really wanted to start racing road bikes, but since this was a team sport, and I needed a team to train with. I talked to Shane and Dave, the race directors of Zia Velo, and asked what I needed to do to join up with them.
I loved racing for Crazy Cat, and they always treated me well, and they still do support me. They still give me a team discount now and then, and still hook me up with a lot of free repair work. I still have a running tab at their shop. I’m still in contact with those guys. They have been very supportive and understanding that if I’m to ride road, I need to team up with the people I train and strategize with.
I had long envied the awesome yellow and red Zia Velo uniform, because it’s like a big New Mexico flag, which I think is really cool to represent where you’re from. Zia Velo is broken into two groups of racers, the Zia Team and the Velo team. The Zia guys are unbelievably fast and are in a league of their own. I’m on the Velo team, and we race a lot, but not quite to the level of Zia. This is nice for me, because it’s a little more laid back. On Velo, we are still in the learning stage, and constantly trying to figure out the tactics of the sport which are huge, different things I work at different times.
Road cyclist are the toughest athletes of any kind of sport I’ve ever attempted. Don’t be deceived by the spandex! The amount of pain you suffer on a hard climb is unbelievable. Not only that, but you see these guy’s get covered in road rash, jump back up, and get on their bike, and finish a hundred mile race. More often than not, if a person’s bike is still functional , a cyclist will jump on and try to finish after a crash. If you get dropped from the group, or have to chase down the breakaway to get yourself or a teammate back in the race, it requires a high amount of pain, but not a lot of people are capable of it.
Guys like me are not going to win many races, but where we come in handy, is when it comes time to chase down a group and suffer a lot of pain for a teammate. The funny thing is, this is what you live for. For some of us, the thrill of the chase and seeing a teammate win is just as exciting as winning yourself, especially if you helped them put them in that position.
I went over a year before I had my next MS flare up, but when I had it, it wasn’t very severe. Even though I still feel the effects of this attack years later, it was something I managed on my own and didn’t let it slow me down. Instead of racing like this was my last year to race, and next year I’ll be in a wheelchair, I started to realize that with all the riding and racing, that I wasn’t having the amount of attacks or the severity of them as I likely would have been, if I had just been sitting around and taking it easy.
I changed my strategy from riding like there was no tomorrow, to riding with the purpose and intent suppressing my immune system. Of course, you still need a rest day here and there, but I would try to get to where I would need rest day, and then try and ride one or two more days passed it. When people tell you that you’re over training and you’re gonna get sick, that’s exactly what I was trying to do. If I felt myself getting the occasional cold, then I felt like I was doing it right.
The MS drugs I was taking, we’re pretty much a fake virus that I would put into my body, so that my immune system would fight it and keep itself busy so that it wouldn’t attack my brain or spine. I figured if these medications are 40% effective in slowing down the progression of the disease, then maybe I can add another 30% effectiveness by over training. Another thing I wouldn’t do, was not take an off season. This got pretty tiring after a couple years, but it seemed to work.
Every once in a while, people would get after me for trying to go too hard in the off season, or make friendly jokes at the tall, compression socks I have to wear so I can feel my toes because my feet go numb on rides. People just didn’t know what I was trying to do, and I didn’t want every body knowing I was fighting MS. I did not want people treating me any different or feeling sorry for me. This was also great because on The Heater I was treated like a threat as much as anybody else. There were no favors letting me get away and stay away. I can’t tell you how many times I have been relentlessly chased down and passed right on the line of the final sprint! There’s no favors on the heater, and people don’t feel sorry for you there. If you get a flat tire, a leg cramp, or any kind of mechanical problem, you’re on your own. You will be left behind to ride home alone. No mercy. I love the heater!
My View on MS and Riding with Zia Velo
When people are sick, I think there’s always a level of it that is in your head. Sometimes it’s hard not to let it get in there, and it will actually start making you feel worse then you really are. I think this is as true with MS, as the common cold. If you’re walking or moping around feeling sick, it actually starts to feel worse. I think if I had a bunch of people constantly coming up to me asking how I felt, I would start to think about it all the time, and mentally start creating problems and a weakness that wasn’t even there.
That’s one of the reasons why associating myself with a team that is based around health and fitness has been so good for me. This team has former pro cyclists, personal trainers, coaches and even a girl that is a pro triathlete! I’ve gained thousands of dollars worth of knowledge riding next to these people and taking their priceless advice. I’ve saved thousands of dollars by my strategy to keep moving and pushing myself farther.
I’ve made friends on this team that I meet with on a weekly basis to work on each others strengths and weaknesses. My friend Tim can kill me on the climbing intervals, but I’ll get him when we do the time trial practice. Steve kills me on the run, Norm destroys me in the pool. Everyone is my superior in at least one way. I break a bike (this happens way to often by the way), Jason let’s me use one of his. The amount of unity on this team is amazing. Somebody needs something, somebody always steps up and helps them out.
Here is a quick example. Just this past month, I came from the hospital for one weekend when Zia Velo had it’s local race. I was watching the Crit races, and there was a big pile up where almost the whole field crashed. Within seconds, everyone was being taken care of. Luke’s bike (a fellow Zia Velo rider) was too damaged to continue. Without a thought, Erik (another Zia Velo rider) switched bikes with him and Luke was able to finish the race. I could go on and on about how many times I’ve seen little things like this happen with this team.
The response from Zia Velo with me coming to Chicago for this transplant has been massive. The constant check-ins and shout outs have been priceless. Knowing I’m being thought of means the world to me. As I’ve said before, I’m just thankful I’m able to be here with opportunity to stop the progression of this disease.
When I Am Done With This Treatment
Just this past riding season, I’ve had a few flare ups that I haven’t mentioned, but nothing too significant that threatened my being able to ride a bike or do my job at work. When I finished finished my triathlon season this past November, I decided I would finally take a short break and take it easy for a month. That was a bad mistake. I started to flare up, and this time I was feeling it on my whole left side. Before I knew it, I was having to think about pulling my left leg up when I was peddling, so I could match my right leg. All my normal time trial times and running paces started dropping significantly. It was pretty scary. I felt like MS was finally about to catch me.
Luckily for me, the reason I slowed my training down was because I knew I had this treatment coming in Chicago. Fortunately, I was able to manage it as much as I could, until I came here to stop the inflammation of that last lesion!
I’m definitely going to have my work cut out for me when I get back to Las Cruces, in order to get my strength up, but I know there are plenty of guys and gals standing by, ready to whoop my butt back into shape. I’m looking forward to it! People can tell me that they don’t agree with my strategy, and people have told me this a lot. I did make it to Chicago without a cane or a wheelchair. I’m still going strong. I feel great in here. It hasn’t been the most fun thing ever, but I made it here. I guess I’ll never know for sure what the course of my disease would have been if I didn’t start riding my bike ,and trying so hard to stay active, but nobody can tell me that my strategy didn’t work. Thank you to all that have riden with me, suffered with me and pushed and pulled me.
Posted from WordPress for Android