The Underdog. Just Because It Burns Doesn’t Mean You’re Gonna Die, You Gotta Get Up and TRI, TRI, TRI!

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Progress and Finishing PT

Well, things have continued to get better as I’ve reached the 3+ months post-HSCT. After working one month of light duty at the Las Cruces Station, my blood work said that my white blood cell count was finally high enough to stop my PT at Southwest Sport and Spine and my public pool ban was lifted. Because of that, I have now been able to start swimming at the NMSU swimming pool! I am extremely grateful to Marcus, Bridget, and Andy for the great job they did on getting me back on my feet and helping me get my stamina up so that I am now able to swim, walk, and ride without feeling like I was going to have a heart attack. When I started there, my heart rate would get into the 180’s just walking through the parking lot or by doing the simplest of exercises in the pool.

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 Swimming at NMSU is a totally different story than being tethered and swimming in place at PT. Fortunately, my stamina is up enough, because each length at NMSU is 50 yards.  When I calculate it, it is 15 laps for a mile. I try and swim 1-1.5 miles at least 3-4 times a week. My stamina is good, but my speed needs a lot of work.

Back to Full Duty

I’ve also returned to full duty at the Santa Teresa Station and it is good to be back among people I know. I was very well taken care of during my time at the Las Cruces Station and they really looked out for me over there. A couple of agents that I was able to become friends with during my time there even donated weeks worth of annual leave to help me get back pay for the weeks I was not getting paid. This is saving me from being in the hole on my leave for over a year. I can’t say enough about what a blessing this is to me and my family.  Having people donate weeks of vacation time worth thousands of dollars is just an example of how the agents in the Border Patrol really have each other’s backs! Returning to the line has been a bit of an adjustment. It is a lot busier than it was when I left for Chicago and it has been challenging at times trying to get used to the midnight shift hours while trying to heal. I feel really drained some days but for the most part I feel really good.

Luke Michael Barrow

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When we started 2015, we knew it was going to be a crazy year. The transplant was obviously the big obstacle that had us feeling overwhelmed, but the other big story of our year has been the baby boy due in July.  When I found out I might be getting HSCT, we were told one of the side effects would be becoming sterile from the chemo. They tell you to use a sperm bank, but we really wanted to avoid this and get it done the easy way before it came to that.  We were worried about this because I had done infusion steroids in September and this can really lower the sperm count. It took us a year and a half to get pregnant with Olivia after a cycle of infusion steroids. Fortunately, we got the job done and went to Chicago knowing we were expecting a baby boy. Northwestern even bumped up my transplant so that I could be healthy enough to be there when he was born! Everywhere we walked and went this little guy was right there with us getting bigger and bigger.  All the nurses at Northwestern knew my wife was the pregnant blonde lady that was constantly coming and going from the hospital. They also made me promise to send pictures of the baby when he was born. Getting myself well enough for this has been one of my biggest motivations to push myself to be strong enough when he gets here

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On Saturday, July 18th 2015, Luke Michael Barrow was born. He was 8lbs 9oz and 20” long with a head full of dark hair! I gotta say, Luke is one handsome little guy! We are so excited he is finally here and now the whole family can start focusing on recovering. Liz had to be in the hospital a couple days because he was a C-section birth but fortunately Luke was able to stay right in her room. Thankfully he is a very chill baby and enjoys his sleep! It’s pretty exciting to be able to have this happen 3 1/2 months post-transplant and to be feeling so good. I even had a decent amount of hair in the first baby pics!

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Unfortunately, a couple weeks after Luke’s birth, Liz kept swelling and started getting fevers so she had to go back to the hospital. She had an infection because there was still a piece of placenta inside her, so they had to remove it. She had to stay the night in the hospital and once again, 2015 had pulled one of its stunts on our family! Fortunately, Liz is out and doing great.

Return to triathlon: RELEASE THE KRAKEN!

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At 3 months and 3 weeks post-transplant and through a lot of hard and grueling work, I was able to compete in the Roadrunner Triathlon at White Sands Missile Range. Returning to triathlon this year exceeded all of my self-expectations. This triathlon was no easy sprint ether. It started with a 7k run with a long, uphill climb on miles 2-4. I hadn’t ran in over a month, until that week, but the run went well considering. I managed to run averaging a 7:50 mile pace (much slower than my normal average but I thought it would be much worse!)

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I had some swelling in my knee from my run earlier that week, so I took half of one of the painkillers they gave me for bone pain while I was on Neupogen. This worked well for getting through the run, but totally destroyed my bike. The bike was a 40k (26 miles) and I felt good for the first half and started catching a lot of people. But on the way back, I was hurting. I felt like I couldn’t get my adrenaline going and didn’t have my normal burst that has dominated this bike course for the last few years. I even caught a guy, passed him, and then after about a minute, he passed me back. This has never happened to me on the bike in triathlon!!  I started to bury myself to catch back up, but remembered that he is a really bad swimmer, so I let him go. I then started trying to conserve my own energy for the pool. I caught him within the second lap and left him far behind. I was so exhausted that once I got far enough ahead of him, I slowed my pace and went into survival mode. The next guy ahead of me was too far to catch, and I wasn’t going to be caught from behind. When I got out of the pool, I sat there for a long time trying not to puke. I have never been more exhausted on a triathlon of that distance, but I finished it! I was way off my normal time but still managed to finish 5th overall and 1st in my category.

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Being able to complete this race really says a lot to me about what the transplant has done for me. None of the weakness I was feeling was MS related from any new symptom, but all from the chemo and meds. My body is still trying to heal from going through a serious ordeal and it’s going to be awhile before I’m back to where I was but I definitely feel ahead of schedule!

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The First Test of my New Immune System

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I went to a gymnastics class with Olivia, so she could run around and jump on the trampolines and foam pits. Apparently I didn’t sanitize myself fast enough afterwards, because I started feeling the symptoms of a cold later that night. Since HSCT, I had yet to have any kind of sickness, so I was a bit nervous that my body might take a while to kick this thing. I made sure to get plenty of rest and really laid off the workouts. Unfortunately, I still had to go in to work because my leave balance is still drained from Chicago.  Fortunately, after a few days, I started feeling better and was able to have about a day of feeling normal before the next race!

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Chile Harvest Triathlon. The Rocky Mountain Regional Championships

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A week after the Roadrunner Triathlon, I headed up north to Socorro, NM to compete in the Chile Harvest Triathlon. This race is much more competitive and has a couple hundred more people. Last year, this was one of my best performances and I broke the course record on the bike by being the only person to finish the bike in under 30 minutes. This year that was out of the question, but I still wanted to race it so I could build off my momentum from the previous week. This one went better. The swim was a bit rough, but my bike was on point and much better than last week. This bike course also has a lot of climbing so it tends to hurt a bit, but I was feeling good. It was a 20k course, but I managed to beat riders by a couple of minutes that beat me by a couple of minutes last week on a longer course.

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The cold I had been fighting all week made itself known on the run and I struggled a bit and felt a little dizzy. I started the run right behind my buddy and training partner Norm and passed him in the first mile, but he stayed right behind me the whole way. On the third mile, he pulled away and whooped my butt. This was the first time Norm has gotten me on a run, but in my head I was loving it because I told him not to ever go easy on me if I was having a bad day.  It was great to see him having a great day and showing that killer instinct that is always so fun watching when he’s using it on other people! This kind of thing always helps me push a little more in my training so I can get better in the areas I’m struggling.

I was over four minutes slower overall than last year but I managed to win my category. A couple of people beat my bike time, but my course record from last year is still holding strong! It’s funny because I keep saying that the biggest thing about recovering from transplant is that it’s a rollercoaster. This is still the case. One week it’s a bad bike, good run, the next week its good bike, bad run. One week I will feel really good, others I’m dragging a bit and really have to work hard to find my motivation.

“Shut up Legs!” –Jens Voit

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This last week has been one of those weeks that I have really struggled a bit with energy. I have had to alter some of my workouts from the monsters I had planned into active recovery rides until my energy comes back. I’ve been trying to get my miles back up, because Bike MS is right around the corner and I am going to be riding 100 miles day 1 and between 50 and 60 miles on day 2. My ability to climb on the bike is still taking its sweet time on retuning to me and that has me a little nervous. Bike MS and a couple of other bike rides I have coming up are packed with some pretty big climbs. I keep working on climbing, but my muscles are really fighting me on this. My flat speed is coming along nicely and I’m as strong as most people in the group on the flats, but every time I climb, my muscles scream and burn and its torture to push through it. I am feeling improvements, but I still get a sick feeling in my gut when I know I have a big climb ahead of me that wants to hurt me.

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 I went to Cloudcroft with a couple of cycling buddies/teammates to work on bigger miles and high altitude climbing. They worked me over good! By the end of our ride, I was pretty smoked, but it was the workout I needed. It’s always a hit to my pride when I’m the guy that is being waited for, but I’m grateful they helped me out and I’m looking forward to overcoming this climbing problem! Hopefully, my legs will be recovered from this and ready for Bike MS. My longest ride post-transplant has only been around 70 miles, so 100 is going to be a nice little jump.

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“The Underdog”

Before most of my harder workouts and the triathlons, I have been watching the ten minute Jon Blais clip on YouTube from the 2005 Ironman. This is an Ironman he did when he already knew he only had a short time to live. I’ve talked about this before, but it really motivates me. You can really learn a lot about life from a person that knows they are about to die.

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The other day was the second anniversary of the day my dad died and that got me thinking about life and how mine is going and all that has happened since he’s been gone. Two years ago, I was at work and got a message saying that my dad was dying and to hurry home. I drove over 100 mph and ran every red light and made a 45 minute drive that usually takes 30 minutes. Unfortunately, when I got there I was already too late. We knew this was coming and it wasn’t really traumatic, because he had been in that hospital bed for a long time. My mom, my brothers, and I sat with him for a bit and told stories and laughed about some of the good times. It was a good goodbye, despite just missing being there with him at the exact moment he died. It was his time to go and although it was sad, we were relieved that he was free from suffering and from his crippled body.

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Every day of my life my dad was crippled. He had been crippled for most of his life too, but he did all he could to exercise and keep walking. He stayed out of a wheelchair until the last few years. As a kid, I have memories of him walking all through the mountains, taking us hiking, camping and teaching us how to ride bikes. Although he had to use walking sticks or even lean on us to get up stairs, I never once heard him complain about his condition. How he could do this still amazes me.

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Just two weeks before he died I went to go see him at the hospital he was staying. I was leaving right after that visit to do the Boulder 70.3 half Ironman and wanted to give him my info so he could track me during the race to give him something to do. In all my years he was never able to see me race, so I thought this would be good. We had a lot of great conversation that day, but one thing I really remember him saying was “Mike I know you’re really worried about this multiple sclerosis thing and you’re doing a good job at doing what you’re doing to beat it. You’re going to make it.” At the time I just thought he was trying to be positive and keep me going. I didn’t know anything about HSCT or anything that could stop the progression of this disease. Being crippled and wheelchair bound like him was one of my biggest fears. I would get mad at him when he would give me that kind of advice, because I didn’t want advice about how I was eventually going to be crippled like him and how to smile and take it.

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While being interviewed before the 2005 Kona Ironman, The Blazeman, Jon Blais, who had been diagnosed with ALS and had only two years left to live said “My version of the Blazeman is he’s just an underdog that’s had to overcome obstacles, and he’s still doing it.” I think my dad was like that. I think my life has been like that as well. Trying to beat a disease that has had no cure definitely makes me an underdog. Making it five years and having both of my beautiful children and an amazing wife that supports me. Having multiple flare ups, but still managing to keep a physically demanding job was a long shot. Also, switching from mountain bike to road biking and triathlon when I lost my depth perception. An underdog continues to find ways to overcome. Despite frustrations of climbing, running, fatigue, and leg muscles that hate me right now, I have no doubt I will find ways to do this. Part of it is because I’m ridiculously competitive and stubborn. Part of it is because it’s in my DNA.

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I’m now 4 months post-transplant and feeling better and stronger every day. Yeah, I have to give myself a lot of pep talks at times and I am still having a lot of hard days, but now I have a son that’s going to be watching everything I do. My daughter already does and I love it! I wish he could have met his grandpa. My dad only got to see my daughter Olivia a couple of times. One of his last requests was to have her and our Labrador Barney brought to his hospital window so he could see them though the glass. Olivia couldn’t go inside because he had been sick with something and didn’t want to get her sick. I get a little sad thinking about this, but at the same time I’m happy knowing that in my life, I had things that made the day of a person that was in their final days. He would have loved Luke.

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 “The meaning to life is to live life. The meaning of life is life.” -Jon Blais

 

Miles Ahead: Getting Stronger, Back to Work, Raising Awareness, Inspired.

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Day 77

I cant believe it’s already Day +77! Time flies when you’re having fun, right? Things are still going good for me and I’m continuing to get stronger. Some days I feel so good that I forget that I’m recovering from a major medical procedure, and I find myself doing 3-a-day workouts like old times and it can leave me feeling drained. Other days I pull this off just fine, but most days my body definitely reminds me that it’s still healing and has much work to be done still until I’m at the level I was at. However, one to two workouts a day and I’m feeling great!

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My white blood cell count is still low. I think this is the area where most people are probably ahead of me in the recovery process. My last two blood tests have had my WBC at a 3.75 and 3.4. This has been the lowest its been since leaving the hospital, but they said it’s completely normal. The Neuprogen shots in the hospital help your counts go way up, but as time goes by, and the new immune system is grafting in, the numbers will drop and rise slowly back into the normal range of 4.5-10. I did my blood work again two days ago and I’m hoping it’s finally back on the rise! I still have no physical restrictions, in fact they told me to keep doing what I’m doing but to be extra cautious of people who might be sick or germs.

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My hair is slowly but surely starting to grow back, but is not very thick yet. It is coming back the thickest on the sides near my ears, but on top it is growing back maybe one in every twenty pores, so it looks pretty awful. I let it go for about two weeks, and it looked like the hair of a sick, balding old man.  I trimmed it down with the clippers and will continue to do so, until it is ready to come back a bit more thick. Despite the fact I have an ugly head, its great having no hair in the summertime, because its been so hot outside and it feels great in the pool and under the bike helmet.

Back to Work

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Two weeks ago, I returned to work on light duty because we haven’t been paid in 6 weeks. We can’t express how thankful we are to all the GoFundMe donations that saved our butts during this time! I should be able to borrow sick leave from myself and receive back pay for some of this time, so I can use the GoFundMe to pay our incoming bills. We are amazed and touched with how many people came to our aid and saved us so that I was be able to get through this and back to work! My working restrictions are still very strict and it is important that I am isolated from people. I especially need to stay away from the illegal immigrants that are so often sick and probably not vaccinated. They are allowing me to work in Las Cruces, which saves me from my normal forty mile commute. This also helps save gas money and that’s great because I’m not able to work the standard two extra overtime hours a day that we depend on. I’m out of uniform sitting at a desk in my own little dark room at the far corner of the station. I’m so thankful to be back at work and once again providing for my family. As soon as my WBC goes back up, I can return to normal duties and back to my beloved midnight shift in Santa Teresa.

Miles Ahead

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Physical Therapy is going great. About the time I got my freestyle tethered swim to about 3.5 minutes, and started strapping weights to my wrists for all my other exercises, they decided I was ready for “aftercare”, a program where I know longer need a trainer to guide my workouts. I do have free access to the pool, so I can do my workouts on my own. Before this happened, they continued to monitor my heart rate, even while I was in the pool, until the chemo and steroids finally left my system and my heart rate returned to normal. I gotta say, my heart rate getting under control has been great for my training. The last couple of weeks my stamina in the pool has really jumped up. I did about 5 min intervals in sets of 3-4 for about a week and by the next week I was up to 20-35 min intervals. Yesterday, I did 45 min without stopping. This would have been hard for me even pre-transplant!

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I’ve also started a diet to try to get off the hospital and steroid weight. I adopted most of the diet strategy from the 21 Day Fix Extreme by trying to eat better portions and making sure I eat the right amounts of each kinds of food. I’ve increased my weekly bike miles and have been averaging over 150 miles a week for almost two months now, including several rides over 55 and 60 miles. I am still not near as fast as before, but everyday is an improvement.

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The last couple of weekends, I’ve skipped my long Saturday ride and the 100+ degree heat and headed to beautiful Cloudcroft for some epic high altitude mountain biking.  At 9,000-10,000 feet, shorter mountain bike rides are every bit as difficult as a long road ride, plus it keeps me from burning out on one thing.

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I was on my mountain bike a few weeks ago riding our local Dona Ana trails, and I noticed my depth perception seemed to be improving and the speed my mind processes on the trail has drastically improved! I ended up throwing down a good time on the trail simply because my mind was so sharp. I was able to use bike handling to make up for what weak legs were lacking! This was a real exciting moment for me because my cognitive function and depth perception have really hurt my mountain biking the last five years. My ability to go downhill on a mountain bike has probably been the biggest hit to my cycling when it comes to my MS. It’s really exciting to me that I’m starting to get this back. When I got this treatment, my biggest hope was to stop my MS where it was. To see some of my disabilities reversing is a huge added bonus!

On the road bike, I’m really starting to notice my strength is returning as well…well, on the flats anyway. Climbing is still really painful and my pace on climbs is not good at all. Climbing has never been my specialty but I like to do it in training. I’m a big guy, but on a good day, I could climb pretty well and hang with the group. I’m definitely not at the great climber level!! Right now I’m doing my hill climbs on the airport hill and my times are still 3 to 4 minutes slower on that climb than before the transplant. I know I’ll get them back up. On the flats, I’m getting to where I can hold a decent pace and stick with the group, as long as I spend some time in the draft recovering. I did a quick time trial the other night on Shalem Colony, and held a decent pace for most of it, but by the end my legs started getting tired and slowing down. This never used to happen! Whenever I would get tired on a TT effort, it has always been a breathing/heart rate thing, but never a leg thing. Strong legs are what have always kept me in the game, despite outweighing most cyclist by 40-50 lbs! I guess it’s now time to start working on leg strength, along with climbing. 🙂

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I have started riding the Heater again with Zia Velo, and it has been so fun being back with the team and getting those high intensity workouts! The Heater is now on a new course that changes week to week on where the climbs are. The first couple of Heaters I did, I was getting dropped about the halfway point. I was too weak to even take a pull, in fact, I took one pull on my second Heater and was so drained, that I got dropped and had to ride the 15 miles back solo! Lately, I’ve been getting dropped on the climb on the far end, but I have managed to time trial myself back into the first chase group behind the leaders. The important thing is I’m at least getting to the point that I can take my fair share of pulls and not have to draft the whole way.

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Yesterday (day +78), we had a throwback Heater day and did the old flat course in Mesilla, and that was amazing! My legs were really feeling good and I ended up getting in a three man breakaway with Kurt and Carlos. This was actually pretty cool, because in the past when I can get on a break, its usually Kurt or Tim that came with me. Unfortunately, Tim was out-of-town. Jerry (who is usually the man to beat) was off the front of us and despite maximum effort, he still beat us! Thanks to a great tailwind, I was able to take some massive pulls on the second half and sustain speeds from 26-30 mph. It was so fun to be back in the breakaway going as hard as I could for that distance. I ended up finishing second behind Jerry who was easily a minute or more ahead! This was by far my best ride since the transplant. The rollercoaster continues though. After my breakthrough Heater ride I was thinking I was going to rock it on my Saturday ride too(Day 81), so I went out for a 60 miler and cracked after 30 and ended up suffering for the next 30! Painful day but at least It put my weekly bike miles over 160.

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I still find myself getting frustrated from time to time, because I still feel weak. I quickly remind myself that when I found this treatment and read about the recovery process,  I expected it to take much longer to get back to the point I am at right now. I have already exceeded the recovery goals I set for myself for the entire year of 2015 and its only been two months! This recovery has been incredibly painful so far, but that’s because I’m pushing as hard as I can to get back. Fortunately, I have years of suffering on the bike, so this kind of pain isn’t totally new to me. As long as I remind myself I’m miles ahead of where I thought I’d be right now, it makes it much easier to swallow my competitive pride and remember to be patient.

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I’m also trying to sharpen my brain up a bit, and I’ve downloaded Luminosity on my phone to do a few exercises a day that help me to strengthen my cognitive functions like memory, problem solving, speed, etc. This has been really good, especially because my last flare up hit my ability to concentrate as well as my short-term memory and ability to process some information. This has been very frustrating, but like everything else, I feel it is getting better.

A Little Media Attention

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When we were in Chicago, we were contacted by a reporter from the Las Cruces Sun News about doing a story on me and the stem cell treatment. We told them we would meet with them when we came back to town. When they came over, I felt like we had a really good interview and it was good having Liz there with me, because I still had some chemo brain and she has been such a big part of all this anyway. A photographer came over too and we took some family pictures and I took some solo pics in the garage with some of my bike stuff. They ended up putting me on the cover of HealthyU  (a local magazine) for the month of June. I thought they did a good job on the article and the photographer did great as well. The photographer Robin actually contacted me later because she has a friend in New Jersey with MS. I’ve been in contact with him about this treatment and hopefully can get him pointed in the right direction. I’m very happy to get my story out and start helping to raise awareness of this miracle therapy for MS. On June 24th, the article was also the cover of the Health section in the Las Cruces Sun News. I have already received a few calls and emails from people who have seen the article, so I’m glad to help get the word get out. Hopefully, this is only the beginning!

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Paying it Forward

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My first week on light duty here at the Las Cruces BP station, one of the supervisors here told me about an agent at this station that was just diagnosed with MS last week. He is currently off work because his symptoms are so severe.  I was able to talk to this agent on the phone and give him advice to the best of my ability about what he needs to do from here on getting his flare up under control. I could tell the conversation gave this agent hope and lifted his spirits a bit by hearing you can fight and beat this disease. I could tell he has the right attitude and determination to do what he needs to do to give himself the best fighting chance to fight MS, until he can get the treatment to stop the progression of MS.

I’ll never forget that horrible week when I was diagnosed. I had the overwhelming feelings of hopelessness and depression come over me. I didn’t have anyone that I could talk to and give me hope. The only person I had ever met was bed ridden and in a horrible state. What I would have given to have someone to give me hope during that dark time! Another coincidence was he had just heard about me from an outside source earlier that morning because his wife works with my friend, John’s wife (John’s wife also has MS)! When I talked to him, he said “I just heard about you this morning!” When the station called and told him I was detailed here, it just affirmed things happen for a reason. Many people don’t believe in God, but I do! I have lived in Cruces my whole life and am in my 14th year with the Patrol, and have never once set foot inside this station until that week…the same week they have an agent get diagnosed with MS, a disease only 400,000 out of millions in the U.S. have! The way I feel, I was able to find this treatment because it was an act of God. Everything went so smoothly from the time I found out about it and we just knew it was meant to be. Sometimes people are healed miraculously and sometimes we are shown how we can be healed and overcome our trials.

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Susan May Moody, my photographer and stem cell transplant friend from Chicago that survived Hodgkin’s Lymphoma, is always talking about “paying it forward” and is constantly doing random acts of kindness to brighten people’s day and making the world a better place. She goes to the Bean in Millennium Park on her lunch break and takes pictures of people on pretty days and posts them on her Facebook page “Jumping at the Bean“, so people can keep them at no charge. When I was in the hospital, she had people jumping holding up signs for me to encourage and brighten my day during some of my hardest days ever in the hospital. She didn’t have to do this. I had met her for only five minutes before I went to the hospital, but she wanted to help and showed genuine interest in how I was doing. When I was released from the hospital, she dropped what she was doing and met me at the Bean again to take a picture of me again, because she knew what it meant to me. When I shared a link on my Facebook a few weeks ago asking for donations to help a friend who’s 8-year-old daughter was dying of cancer, guess who the first person was on my friend’s list to donate and share the post on their page with a challenge to do the same? Susan loves a good hashtag too. When she does these things she leaves #payingitforward as a signature. I’ve written a lot about people who inspire me lately and I’m learning people who are faced with serious trials or death, have the most genuine desire to inspire and make a difference! I hope I can be like Susan and help as many people as I can and pay it forward with this new opportunity that I’ve been given.

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Maddy The Mighty

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I mentioned my friend whose daughter was dying of cancer. On June 2nd, they found out their little girl Maddy had cancer in her bones. When I read this, it made me sick just thinking about how this could happen. Being the father of a little girl who is my whole world, I couldn’t even sleep at night. I’ve never even met this little girl, but seeing her pictures was really hard, especially a video of her learning to ride her bike, because I’ve been working with Olivia on her bike. I just talked about how I believe in God, but how can he let this happen? I can’t tell you how many nights I have gone into my daughter’s room just to sit next to her crib while she’s sleeping. My heart aches for this family and what they are going through.  On June 4th, they found out the cancer was very aggressive and that she would not be able to be treated. They told them that she only had weeks or months to live and that she would be leaving the children’s hospital to go spend her last days at home. When she was told she would not live, she was sad and told her parents that she just wanted to make a difference in the world. What kind of 8-year-old thinks like that?!  When people started asking what they could do to help her family they responded on the Facebook page  Maddy the Mighty  that Maddy wanted to make a difference in the world.

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People started performing random acts of kindness such as paying for the food of the persons drive through, handing out popsicles at the park, taping quarters to vending machines, taping money to gas pumps and snacks at the grocery store, and leaving money and detergent on the washers at Laundromats.  Maddy’s dad, Brian told a story on one of these acts. “There was a person who paid for groceries behind them, and that person paid for the groceries behind them. No big deal, right? But that person whose groceries were paid for was a lady whose husband was sick, and really needed that blessing. And that, to me, is what these pay-it-forward things are really about.”

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The list goes on and on. With each of these acts of kindness, they leave cards with the Minion characters from the movie, “Despicable Me” and a link to the new Facebook webpage Maddy’s Mighty Minions  or #MaddysMightyMinions, so Maddy and her family can see the difference the inspiration of this 8-year-old girl is making in the world.

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Last time I checked the page had over 17,000 followers and climbing. The Maddy the Mighty site has 10,500 followers. and people worldwide are catching the fever. I even saw a video filmed here in Las Cruces of people handing out water bottles to strangers on a day when it was over 100 degrees outside.

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Maddy only lived two weeks from the day they found out she had cancer and passed away on June 16th. In the short time that she had, she was able to see her dying wish come true. Maddy made a difference and changed the world. These acts of kindness have not slowed down since. Her story is reaching people all over the world and her Minions are everywhere, mowing neighbors lawns, donating hair for wigs, giving watermelon to landscapers….the list goes on and on. God’s light and inspiration is in the hearts of thousands because of an 8-year-old girl. Here is a good article: Maddy Grayless news story in “Today”

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I’m trying like never before to enjoy every minute I have with my daughter Olivia…even if my legs are smoked from a long bike ride I try to chase her a few extra laps around the house, when I would normally take a breather. That little curly blonde girl can run, and she doesn’t get tired! I don’t want to take my time with her for granted.

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Inspire

Now that I have received this transplant, I hope I can “pay it forward” and inspire someone the way Susan and Maddy have inspired me. I hope I can inspire many! I feel like I have been given a huge gift. I know God helped me find this treatment and has helped me make it this far. I feel a huge obligation and desire to help others with MS or other autoimmune diseases get this treatment. I want to be living proof that this treatment, combined with exercise and diet works. I want to be able to race and compete at a level that shocks people. I’ve mentioned before that I have no real desire to do a full Ironman, but I am going to, so I can show people what can be done and try to inspire people with this disease to get moving! It’s going to take a lot of work to get back into that kind of shape. I’m a sprinter…not a long endurance athlete. By the end of August, I fully expect to be able to ride the more than 150 miles in the Pedal los Pueblos Bike MS ride…and not just ride in it, but turn heads when I fly past people in my “I Ride With MS” jersey and make them say “That guy has MS?!” Speaking of inspiration, Bike MS is full of inspiration. Seeing all these riders making it and staying active with this cruel disease, some riding on hand-cycles because their legs no longer work. Seeing all the people riding in support, that have raised so much money to the cause. It’s amazing. This year I will have more names on the back of my jersey that I’m riding for. Last year I hardly knew anybody that had it. One of the names I rode with last year is now two weeks away from going to Chicago for her initial evaluation! She too is an athlete tying to avoid and stop the damage MS can and has already caused.  I hope to help get more people heading that direction. Hopefully this is all just the beginning!

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The Comeback. The First Few Weeks Home.

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The come back. Finally, the part of this procedure that I’ve been looking forward to. When I left the hospital, they gave me no physical restrictions to start getting my strength back and getting back to normal. Fortunately, all of my restrictions involve crowds, germs, and diet but nothing that says I can’t ride my bike or run. It does say I can’t swim in a public pool for three months unfortunately, but I already feel lucky they are allowing me to do this much.

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My heart rate was so out of control when I first left the hospital.  Also, I would wake up in the middle of the night sweating, even if the room was cold. Throughout the day, I would also break out into cold sweats for no reason. It was weird, but this has stopped now. I think it had to do with my blood levels being low, plus the medication.

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The first thing I had noticed since being released was how exhausted I got climbing anything, whether it be a wheelchair ramp, a small hill, or even stairs. In fact, every time I would climb the stairs in our house, I would have to stop at the top and catch my breath. Also, I noticed that I was really shaky and fatigued. I think much of this has to do with the fact I had gotten so out of shape in the hospital and couldn’t be active. But, I think most of it had to do with all of the drugs that were pumped into me while I was there. In the past, when I have been put on Prednisone steroids for MS flare-ups, it has really messed with my heart rate, but I have never been on as many steroids as I have this time, so I knew this was  going to be fun.

Back when I played football, one of my coaches always talked about setting the tone and how we need to go out and set the tone early. This is something that I’ve always carried with me. The day I flew home I wanted to set the tone and start some form of workout. That evening, I went out for my first bike ride. It felt great to be back on the bike, though my heart rate was going at race pace and hitting 186 BPM while averaging 172 BPM . I wasn’t going fast at all. I only averaged 15.3 mph. One day last year, I did the same section of road at an average of 29.1 miles per hour and I promise you, my heart rate wasn’t near that high! I totally expected this, so it wasn’t at all discouraging. I can’t tell you how good it felt just to be out riding again in the beautiful farmland of Dona Ana County.

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Something that was funny about this ride, was that it was my upper body that started shaking and got fatigued before my lower body. My arms felt extra weak and so did my neck. Being on the bike was way more uncomfortable than normal, and I only lasted 38 minutes, but I was happy that I lasted that long!

The next day I went out again, and this time I lasted 1 hour and 2 minutes and even went up to a 16 mile per hour average, but this time I made it 20. 6 miles.

The following day, I went out with my friend Greg and we made it 23 miles and I lasted an hour and a half! I was still only averaging a little over 15 miles an hour, but this ride smoked me! There is a small little hill along the way and this was my first attempt at anything with an elevation gain.  I totally red-lined and hit my max heart rate while watching Greg blast up this hill and leave me in his dust. This was actually awesome for me to witness, because when I started riding with Greg, he wasn’t much of a hill climber at all. I took him on a 70 miler to Hatch, NM and on that ride I was charging up every hill and doing the same thing to him, so I enjoyed watching him get his revenge as I suffered!

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I lost weight in the hospital initially because of the chemotherapy, but I gained it all back and more with all of the steroids, so I decided I needed to start doing exercises to burn fat, before I start actually running again. Plus, I don’t want to start running until my heart rate gets down a little bit more. It’s easy to regulate your heart rate on a bike, but on a run I just seem to suffer. I started doing workouts at the gym on the two different elliptical machines they have. One of them is an incline and the other is just the normal. My elliptical workouts range from an hour to about an hour and 15 minutes. While on the elliptical, I usually watch inspirational Ironman videos on You Tube to keep myself motivated, because I get really bored on elliptical machines. I’ve also started lifting light weights so my arms and upper body don’t get so tired and week.

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My first Monday back I had to go get my labs drawn and my counts were good, except my liver enzymes were high, so they asked me to stop taking the Diflucon until they normaled out.

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That same day I also started my physical therapy at Southwest Sport and Spine. My cycling team has strong ties with this place because they have been a sponsor in the past. Plus, a couple of my triathlon and mountain bike buddies work there. In fact, Bridget, the main physical therapist that is working with me, is one of my triathlon training buddies. Starting PT felt really good because they have been putting me in the pool and I’ve been able to work many of the muscles that have been neglected. I started really slow there because my heart rate had been so high and they are always monitoring that. I’m finally up to where they’re letting me swim freestyle three times for about two minutes and 45 seconds per rep. This really feels amazing on my arms and chest. It’s exhausting, but it is what I need.

My second week of cycling, my heart rate started going down a little bit, but was still high. I did notice that my endurance improved and miles started to double.  I did a 42 mile ride with Greg on the old heater course and I felt amazing. It probably helped that I was on the old battleground where I learned to push myself to the limit on my road bike for the first time. I also made it to the elliptical machine just about every day that week.

During that week, I also started working on hill climbs, because that has been the hardest part for me on the bike so far. I did the Saturday ride with Zia Velo.   I was almost the last person up the hill on the big climb, so I went out the next week and I worked on that hill climb a few more times.   I feel like it’s getting better and I’m knocking a little over a minute off the climb every time I do it.

Right now, my heart rate is finally coming down to the normal range and that’s making a huge difference in what I’m able to do for my recovery. Now I’m starting to get more excited about this. It also helps that when I’m done with my training for the day, that my legs aren’t tingling at night like they used to. I also feel like my left side is getting a little stronger. I’m still left feeling pretty tired after a good ride or work out. I end up needing to catch up on a lot of sleep after, but even that’s getting better every day. I even survived about half of the heater before getting dropped. Of course, I only made it that far because I was riding in the draft the whole way.  I feel like I’m starting to really come back and getting better and this excites me.

Comebacks

I feel like I’ve had to make a couple of comebacks to my life. Some examples are when I was first diagnosed with MS, when I broke my foot playing basketball, when I broke my elbow mountain biking, when I tore my meniscus snowboarding, and a few other injuries along the way.  I know not to get too discouraged because I know I’ll make it back.  Somehow, I feel every little comeback has made me stronger in a new way. When I broke my foot, I started running as soon as it was strong enough. I never liked running before, but I was doing a lot of elliptical work when the cast was on my foot and it made me want to start running. When I tore my meniscus, I started doing more endurance stuff, like riding my bike and swimming. When I got MS, I started riding my road bike and got stronger on the hills and discovered triathlon.

The important thing is to always get back up when we get knocked down, and as quickly as possible, as long as the body is ready.

Last year in the Southwest Triathlon series I was doing, it was my goal to win a race overall. I didn’t want to just win my category, but I wanted to be the first one to cross the finish line period. I had been in the overall lead a few times throughout the season, but only to get passed in the pool (in NM many sprint triathlons end in the pool) or caught on the run near the home stretch. I could usually win the overall bike time, but the super runners or swimmers always seemed to have their way with me at the end.

I picked a duathlon in November that ended with a 50 kilometer bike course.  I chose this race because I knew this one played to my strengths. I had been training hard on my time trialing and felt confident I would win this race. Six days before the race, I participated in a local criterium bike race in Downtown Las Cruces. Criterium (crit) races are races that involve short laps and they go off time, and not distance.

Anyway, right before the start of the race we had a quick rain and it made the roads a little slick. During the race, I was on a round-about going pretty fast and I hit a slick spot on a paint stripe and wrecked. I slid across both lanes and the rider behind me rode over my wheel, bending it so I couldn’t continue the race. I was covered in road rash on my arms, butt, and legs.  I also dislocated one of my fingers at the knuckle. I was very glad for the rider behind me that ran over my bike. He was not injured at all because he flipped pretty good.

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Training was really difficult that week because I had giant scabs on my legs and some pretty deep bruising.   Every time I moved, the  scabs would crack and tear and my muscles would really hurt. When I tried to run, I couldn’t make it far, because there was a lot of swelling in my leg. I was definitely concerned about the duathlon, and the question if I would be able to perform like I wanted to. I knew I could do it still, but I just didn’t know if I would be able to pull off the win. Also, my energy level was down because healing seems to take a lot of energy out of you.

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On race day, I got another surprise when I found out the run was going to be off-road in the desert. The shoes I was wearing were not at all made for an off-road run. They are triathlon shoes for when the run is expected to be on pavement. With these kinds of shoes, you don’t wear socks with them and there are little holes in the bottom, so water can drain out. The problem with this, is that if you run in the dirt, the rocks tend to come up through the bottom of your shoes and get inside.  It makes for a long, painful run, and that’s how it ended up being. Also, the start of the run was painful because my scabs were cracking and my muscles just didn’t feel right in my legs. My left leg was stiff with the swelling from the wreck. The road we were running on was very sandy and almost immediately, I got a couple of pebbles inside my shoe that were very painful under my feet. It was only a four mile run, so I got through it without losing too much time, but I was definitely off my normal pace.

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When I got to the bike, everything felt pretty good. The course starts on a downhill for a while, and that really helped getting my legs to recover from the run. They started to feel pretty good.

One by one, I started reeling in all of the people ahead of me.  When I got to the turn around, I could see only three racers that were still ahead at the halfway point. On the way back,  I always do little time checks, so I can figure out how far back I am. The guy in the lead was about three minutes ahead of me, and he was a pretty good cyclist. In fact, the same guy beat me at a mountain bike race earlier that year that I got second place in. (This was also a mountain bike race that I felt was one of my best ever.)

The problem with a race course that goes out and comes back the same direction, is that if you’re going downhill for the first half, but you’re climbing the second half. I was three minutes behind, along with a 25 kilometer climb ahead of me, and 50 more lbs of weight on me compared to him. Here comes the pain!

Passing the guys in third and second position came with no problem. Chasing down number one was some work! Every time he passed a post or something that I could do a time check on him, I could tell I was knocking time off. By doing the math, I could tell I was going to get this guy, only if I could hold my current pace! Right about that time, my old friend named “Leg Cramps” started to show up. They were in my left calf and on the inside of my left thigh. This was extremely painful and I had to start pedaling with my right leg only. This is no easy task, especially when you’re climbing a hill at race pace. Fortunately, this only lasted about a minute or so, but it happened a couple more times. With about four miles to go in the race, I finally passed him. As long as I didn’t get a flat tire or the cramps didn’t return, this was my race!

The final 5k has a pretty good little kicker on the hill and my leg cramps began again. But fortunately by then, I had a good little gap on the guy and I was able to spin it out and make across the line in first place! What a way to finish the season!

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This also was my last tri/duathlon before my transplant, so like setting the tone, I also felt it was important to finish strong. I did a triathlon in December, but I did that one with my two brothers as teammates, so I wasn’t really worried about the rest of the competition, like I would in a solo event.

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I could have easily stayed home from that race, or just not pushed very hard.  I don’t think anyone would have blamed me or held it against me because of my wreck earlier in the week, but that’s not who I am. Sometimes it’s nice to have an excuse when you have a bad day, but when you can overcome the pain and have one of your greatest days ever, you can’t beat it.

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I feel like I’m already months ahead of progress, because I came home and set the tone on the very day I flew in from Chicago. I’ve been trying to stay consistent with improving more every week. On my first two weeks home, I averaged 65 miles per week. As my heart rate has dropped, I managed to ride 141 miles last week, and 155 miles this week. I know that most people with MS are not going to be able to leave the hospital and have these kinds of results. Everybody needs to measure improvements in different ways. My miles were already high from training while fighting MS. I know so many that were not as fortunate as I was. Getting back up might be training up to walk to the end of the street or around the block. I just think it’s important to start now. It’s hard enough overcoming the symptoms of the disease, but the longer it keeps you down, the more out of shape you become. Suddenly you’re fighting the disease and trying to get into shape. It’s going to hurt.

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On a quick note, my last blog post mentioned one of my heroes, my buddy Lyle Anderson, and how he is now an Ironman triathlete and runs marathons and half marathons all over the country.

Earlier this week, Lyle was in a horrible vehicle accident. Looking at the pictures of his truck, it was the kind of accident you see and you just know the person died. By some miracle, Lyle survived, despite being trapped in his truck. He lost a tooth, his face is badly cut up, and he will need to have surgeries to put plates or implants in, to repair his cheek, eyelid and skull. He’s already had surgery on an arm.  Both arms were broken.

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Lyle is obviously going to miss the Vineman Ironman coming up, along with his scheduled marathons, but I have no doubt this guy is going to come back as quickly as he possibly can. He’s going to kill it in physical therapy, and I would bet that he’s still going to be lining up at the Oceanside 70.3 half Ironman with me next year. This race might end up being more meaningful for both of us. This is a guy who understands life is about overcoming and conquering these things. I know Lyle, and he’s not the type to feel sorry for himself because of this. Instead, he’s going to feel lucky and make the most out of the second chance he’s been given. I have no doubt.

NOT WITHOUT A FIGHT! Get well buddy!

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Day +6. Inspired, Jumping, and Zia Velo Strong.

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.

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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.

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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!

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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!

My Blog

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.

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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!

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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.

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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.

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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.

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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.

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The Heaters

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.

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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

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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!

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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.

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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.

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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.

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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.

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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

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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.

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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!

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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.

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Day 0: Stem Cell and New Birthday. Worth Fighting for.

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Okay, so I’m actually writing this post at the end of Day 1, because by the end of Day 0, I was so overwhelmed and exhausted by the awesomeness and emotions of the day that I just did not have it in me to update this, but here goes!

DAY 0: As you can imagine, I woke up this day extremely excited for all that was about to take place. I didn’t get the best sleep the night before, because the nausea continued. I had to have the nurse come in and inject me with Zofran, so I could avoid getting too sick. When I was taking my shower for the day, I was feeling the nausea coming back on again, but fortunately enough time had gone by from my last injection that they were able to fix me right up again. I’m trying to keep my complaints to a minimum because I just feel so fortunate, but I am going to say this, “Chemo/rATG nausea SUCKS!!!”.

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The first order of priorities for the day was that I made sure I had “Old Lucky” on. “Old Lucky” is a green shirt that has brought me extra fortune in my life. I have to admit I’m a little superstitious, but I was wearing the shirt when I proposed to my wife, when my daughter was born, and a few other times. I’m not going to get into it any more than that, but this shirt is sentimental, and what better day to bust out “Old Lucky” one more time!

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Liz came over at 8:30 am and shortly after, Dr. Burt and his assistants came in to wish me luck and see if I was ready. At 10:00 am, the doctor that administers the stem cells showed up with my 15 million stem cells frozen in liquid nitrogen. After thawing them out, they were placed in the machine by Eric my nurse, and then pumped into me through the catheter my arm.

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It was kind of a rush when they were going in, because there was a weird smell from the preservatives that they were kept in. It smelled like creamed corn! My vitals started doing weird things, just because of the small reactions to the preservatives. It’s nothing big, just stuff like hot flashes and increased heart rate for small moments of time. It was over before I knew it, but the excitement in the room was awesome! At exactly 10:07 am is when they officially began my stem cell transplant (for the note).

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Kaitlyn, one of Dr. Burt’s nurse practitioners, stuck around a while afterward and answered all sorts of questions for Liz and me. She also let us know that she was going to be my main point of contact for the next year. She told us that pretty much any questions and dealings between home and Chicago would be going through her. This was great news, because she’s very easy to talk to.  She is very down to earth. Any question that comes to mind she does a great job of answering it and seems to know her stuff.

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It sounds like the next few days will still continue to be pretty hard as my blood counts and immune system drop. Nausea will continue, because I still have the rATG steroids in my system. Plus, I’ll be tapering down with other steroids and medications. Even though the stem cells are in, I’m still operating on my old immune system for a couple of days, before it totally drops. At that point, there’s a short time of extreme precaution while waiting for the new immune system to start to grow and for my blood counts to come back up. Also, I have to be extremely careful not to fall or cut myself because I could bleed to death. This is the time when I’m totally Neutropenic and my numbers are too low to count. During this time, I’ll most likely have to have blood transfusions, platelet transfusions, or transfusions of whatever I’m in need of.

 I’ve noticed a tradition among the people who go through the HSCT transplant, is that people have clergy from the hospital or a church come in and bless their stem cells before they go back in.  I am fortunate enough to have my brother-in-law in-law Leo living here near Chicago, who is a priesthood holder in our church. He had to work in the morning and was not able to be here before the transplant, but shortly after, he was able to arrive and give me and my stem cells a beautiful blessing of health and strength.  This was definitely one of the highlights of my day!

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Another highlight came when I found out that my daughter Olivia was in a nearby waiting room with my sister. My sister had been babysitting her while Liz was with me. The closest I’ve been to Olivia since I’ve been here, had been watching her on the roof of a parking garage from a long ways away, but now I had the opportunity to sneak across the hall into the other half of the building. (It is against the rules, but a rule I was willing to break the second I found out she was so close!) I still couldn’t break the rule of being in direct contact with her, but I was able to stare at her through the window of the door and watch her play. They brought her to the window where she could see me and we were able to talk through the glass. She started running around, skipping, and showing off for me all the little dances that she’s been learning since I’ve been in here. Maybe it was all the medications or just all the excitement of the day, but that got my emotions going like never before.  But let’s be honest here, is there is a dad out there that that wouldnt have felt the same way? I would have never understood it, until I became a dad. That little girl gets to me. Olivia, Liz and our baby due in July are the biggest reasons I am determined to beat this disease. The idea of not being capable of providing for them is unacceptable to me and that is why I am here.

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I have pictures of my bikes, races, my cycling team, triathlon buddies, job, family, and friends. I even have  my mental Labrador Retriever, Barney all over my hospital walls. Every doctor, nurse, maid, and kitchen aid that walks in my door, and asks a question about the pictures, gets the run down.  I don’t do it because I’m conceited, and think I’m an awesome racer, but I do it because these are the things I love so much about life. These are the things that drive me to get better and stay healthy.  Yeah, some of it is because I’m confined to this room and I’m getting a little bored in here, but really, it’s the experience of a good quality of life, a healthy life. I have an amazing supportive family and also a second chance. These are the things worth fighting for.

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Race to Erase MS

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What I’ve done since being diagnosed with MS. Tomorrow will be my last race before returning to Chicago next weekend to start Chemo and transplant to stop the progression of the disease.

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I thank God for showing me how to stay strong and helping me find this treatment and for being able to stay healthy enough to provide for my family. Thankful for my wife Liz for allowing me to keep riding,running,swimming and train so I could keep moving.

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Thankful for my team Zia Velo that has kept me strong and challenged me, pushed me and supported me during this time so that there will be many miles still ahead! Thankful for great friends and family that be believe in me and cheer me on.

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One of the big reasons I have been able to keep this disease under control as long as I have has been by staying active and having goals to keep me motivated.

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This is a horrible disease but I’m glad I found a way to fight it and so many reasons to beat it. Who knows, it might even be a bit emotional sitting at the start line one last time tomorrow.

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