“They Don’t Know What You’ve Been Through and They Sure Don’t Know What We’ve Been Through….I Want You To Go Across This Ring and You’re Gonna Knock That S.O.B. Down!

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SECOND CHANCES

It has been a while since I have posted. I feel obligated to keep this blog going so I can help as many people as I can to find the second chance that I have found with HSCT, but that ends up being part of the problem. After so many years of fatigue, numbness, depth perception issues, cognitive problems, vertigo and many other symptoms of MS, I have been feeling so good that it’s been hard to sit still long enough and work on this blog. I have still been busy spreading the word and have had a couple of people I know (and a few I don’t know) head to Chicago for transplant. I have also been working in other ways as well to get the word spread. I firmly believe where much is given, much is required and that is why I know I need to keep the energy of spreading the word.

I wrote an entry a few months ago that I still haven’t posted that talked about riding in the Bike MS Pedal Los Pueblos event back in August. I won’t get into that too much right now because I still plan on releasing that entry. I will say that it was over 100 miles on the bike the first day and close to 60 on the second. I felt amazing the whole way. I rode hard for the names that I carried on my jersey. I rode inspired by the good health and healing that I’ve been feeling. I talked to many along the road about my transplant and ended up recording the fastest overall times on both days. Bike MS is not by any means a race, but I wanted to ride strong and test myself to see if I was really feeling as good as I thought.

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 While I have been back on the bike and running again, I ended up winning a duathlon in November with the fastest overall bike time and second fastest run. I finished it in second place overall.  I won overall last year on this race, but unfortunately I am still only about 90% and that proved to be the difference. I’m looking forward to the rematch next year already.

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Another opportunity was when I rode in the Tour of Las Cruces in October. It was a 100k bike ride around Las Cruces. This event is put on by my cycling team, Zia Velo. Before my transplant, it was my goal to finish the 30 mile route of this event. By the time October had rolled around, it wasn’t even a question that I would be doing the longer distance, because I had already done several rides over the 100k distance and a few over 100 miles. IT FEELS GOOD TO FEEL GOOD!

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REALITY CHECKS

Every once in a while I still get a good reality check. I was told when I was discharged from Northwestern that I would still get my old symptoms from time to time if I get sick. I’ve experienced this a few times now and it’s pretty dang scary! The funny thing is that I notice the return of the symptoms before I even realize that I’m getting sick. The left side of my face will go numb or I will notice that my left side is feeling weak and then a day or two later, I’ll come down with a cold, or the flu. Fortunately, because they warned me about this, I have kept myself from completely panicking.  All symptoms that have returned are all previous things that I have felt in the past. If I were to experience a new symptom, then it would be time to panic and head to the emergency room.

Despite knowing this, it is still nerve racking when it happens. I’ve been so spoiled by how much I have improved that when it all comes back, I can’t get over how many things I had trained myself to deal with. Learning to deal with things one at a time over the matter of years, you don’t even realize how many things were wrong. When they all come crashing back at once, it is a startling experience. It really makes me thankful for HSCT and all that it is doing to heal me. When the old symptoms are back, it is almost impossible to sleep having to lay there at night with tingling feet and nerve chills zapping up my spine and neck! Thankfully as soon as the cold is gone the MS symptoms leave too and I’m back to feeling like a normal human being again!

2015. MOST EPIC YEAR EVER.

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It’s funny how much can change in a year. As 2015 came to an end, I had lots of time to reflect with Liz about how much as happened over the past year. We spent New Year’s Eve at my mom’s house with some of my family, just like we did last year as 2014 came to an end. I had a flashback of talking to Liz about how we had no clue if I would even be accepted for the transplant in Chicago. Liz was in the early months of pregnancy, but we didn’t know anything about the kid that was coming our way. Even if we were accepted, we had no clue if the insurance would cover it or how we could possibly afford to take so much time off work or how any of this would possibly work out. I remember saying that in a year we would know the answer to all of those questions and what a weird feeling it was to know that as the next year rolled in, we would have the answers to all of those things. One thing I remember very strongly was that despite how much could go wrong, I felt a huge calm feeling and somehow knew that it would all work out.

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What an amazing feeling it was to spend New Year’s Eve with Liz and my family again and see us all still standing and feeling healthy. It was great to know I was killing it again on the bike. During the midnight hour, I was holding my new son Luke as the clock counted down and the ball dropped.

I was remembering how amazing Liz was in Chicago running all over the place to take care of me in the hospital, and I also thought of our daughter Olivia that couldn’t come near me. I remembered Liz taking her to the top of the parking garage roof so I could see her run around from a distance.  I was thinking of my sister Laurie and her family that took us in and how they spoiled us while we were there, saving us thousands of dollars. I thought of all of the people that came running to our aid through GoFundMe. I thought of Border Patrol having a fundraiser BBQ. Throwing up all morning on my birthday because chemo and bone pain. Trying to take a shower and fighting to stand up because I was shaking so bad but needed to feel like I was winning somehow. It was awesome to remember people from all over jumping at the Bean with “Go Michael” and #Kickit” signs. 

And then the memories of the hospital: Walking laps in the hospital just before midnight, so I wouldn’t fail my daily goals. Staring at Lake Michigan from the spinning bike while sweating because of my gown, gloves and mask. Collapsing and blacking out during my morning vitals and getting grounded to bed the rest of the day. Blood and platelet transfusions. The best part, getting out of the hospital and coming home. Then I thought of the horrible pain of trying to ride a bike again. The fact that my heart rate was totally maxing out at physical therapy while doing easy exercises. Baby Luke being born. Liz getting hospitalized with complications weeks later. Getting my strength back. Getting stronger.  Feeling better and better. 

I could go on and on about all the things we went through after the hospital, but I won’t.  All I can say is that it hurt. Bad. Was it worth it?  Totally.  To be feeling this good this soon after all that, was worth every drop of the blood, sweat and tears that I shed.

2015 was an epic year. I learned more about myself and my family this year than every other year combined. I think a lot of people don’t think this was as hard on me as it was on other people, because I’m out there doing things most people with MS and this treatment are not. I promise you, it has been hard for me. Maybe even harder, because I have tested the pain and pushed against it. Hundreds of hours I have spent suffering because I want to win. I want to play with my kids and be healthy as long as possible.  It’s easy to say this, but doing it hurt.  A lot. It still hurts. It is getting better. Every day it gets better. Every ride, every run. Every step.

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I’ve been taking part in my yearly ritual of watching all the Rocky movies this week. There is an awesome quote in the latest movie “CREED” when Rocky is coaching Creed in the final fight of the movie that I relate to me and Liz this past year. “They don’t know what you’ve been through and they sure don’t know what we’ve been through….I want you to go across this ring and you’re gonna knock that S.O.B. down! Can you do it?”

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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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Days +7 and +8. Platelet and Blood Transfusions. “If You Don’t Fix You, You Can’t Help Them.”

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Day +7 Dizziness

The days here all seem to be running together now, and Day +7 is no different. My numbers for the day continue to drop, and my WBC is still TLTC.  My platelets are 29, so just 9 above needing a transfusion. Hemoglobin is 8.9, so only .9 above a blood transfusion.

When they came in to check my vitals, the laying and sitting vitals went well, but on the standing vitals, all at once I started getting chills, dizzy, and the top of my head started to sweat. Right at the same time, the machine started beeping saying my blood pressure and SpO2 level was dropping and I had to sit down.

It was determined that a mixture of being Neutropenic and dehydrated caused this, so I found my streak of great days coming to an end. I had to be hooked up to an IV and some other combination of needed fluids for the next couple hours. This wasn’t too bad, because during this time my mom dropped in to visit, along with my nephew Nick and sister Laurie. They also brought me a bowl from Chipotle’s, so really the only inconvenience was being stuck in bed. If I wanted to use the bathroom, a nurse would have to be in my room in case I fainted. Falling while low platelet count and neutropenic =not good!

It was great to finally get out of bed later to get my walks in and a 10 min spin. I definitely felt the effects of having my levels get low. Ten minutes on the spinning bike made me sweat a lot more than it should have!

Day +8 Transfusion Day

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Today, I was woken up by my nurse telling me that my numbers had dropped, so I would need to have a platelet transfusion and then also a blood transfusion. This was because my Hemoglobin was low. This news didn’t bother me, because just about everyone that has this procedure ends up with at least one. I would rather deal with it here then when I’m back home. Also, I’m hoping this will give me a little boost, because I’ve been feeling a little more lagged down the last couple of days. From the moment I woke up today, I instantly felt like crap. This was not the normal chemotherapy nausea crap, but something else. Insomnia is back so I was thinking it was from not getting much sleep, but low blood counts make a lot of sense! The feeling of being absolutely drained was upon me.

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Fortunately for me, my mom and Nick showed up again and they were able to keep me company during this boring process. My mom is like me and has trouble looking up blood coming through a line. I could tell the whole thing was making her really uneasy. I’m not going to lie, I didn’t like the thought of it either, and I tried not to look at it too much. The bag of blood wasn’t too bad, but it was the blood on the line disappearing into my arm that bothered me. The idea of somebody else’s blood mixing with mine makes me completely nauseous. If you haven’t learned by now, it’s the mental things that really bother me. I don’t take it near as well as the troopers down the hall. The platelets went really quick, but the blood is a very slow process, and since we had to do two bags, it seemed like it took all day.

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After my mom left, I got a text from a buddy I work with back in Santa Teresa. He had a bunch of pictures of my coworkers having a barbecue for me on all three shifts to help us with some of the expenses of this procedure. This was also done to help with the money I’m losing, because of all the time that I’m taking away from work. I thought this was totally awesome! Of course, the financial part is amazing, but just seeing all the people coming together that have my back is really wonderful. Very few people at work knew I had MS before I announced that would I would be coming to Chicago to have this transplant done. But since they have known, they allowed me to change shifts so I could get more family time in. Agent after agent has donated to our GoFundme account (including a massive effort from Class 807 in California, a class that I trained as their PT instructor at the Academy). Also, they have offered to donate annual leave, because my leave balances have been at 0 since the end of March. I’ve received lots of texts from random people at work just checking in and making sure things are ok. They’ve offered to send agents here to Chicago, just to help my family out while I’m in here. They also said that there would be an agent waiting for me at the airport when I come home. I’ve even had them contact me to pray! It really is amazing how many people come running to help when your down, and from all the places they come running from. This transplant experience hasn’t just boosted my own confidence of what I can do, it has boosted my faith in humanity.

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I was involved in a dangerous incident at work a couple of years ago. I can’t get into the details of it here, but I can say it escalated very quickly. All my backup was too far away to get there by the time the incident had ended, but they were all rushing my way, as quick as they could drive. I was able to get a hold of a buddy on the hill with an infrared camera, and he was able to see the suspect who was armed and dangerous. This was extremely lucky for us because we were in a pitch black field at four in the morning. The agent on the camera may have very well saved my life, and the lives of the police officers with me. I had never met these police officers in my life and they had never met me, but in that quick of an instant, we were all willing to get each others backs and take care of each other. This is one of the real things I am learning. When you need help, people come running. There isn’t an agent at work that I wouldn’t run into the same situation for ,to make sure they go home to their family again. Another quick note, the agent that was on the hill that night with the camera has a dad that has MS. The disease that I am fighting to cure has effected people who have effected me. I want to get past this disease so I can help those people.

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Like the world of competitive sports, the Border Patrol is not a place where you want anyone to know about your weaknesses. You don’t even want your coworkers to know, because you don’t want them doubting whether or not you’re capable of getting their back. I’ve had to take a lot of sick days because of MS, especially the days when I am having sever fatigue or brain fog. The fact that I’ve been able to even keep my sick leave balance at just over 40 hours in itself was a miracle. In all the many stresses that have come from leaving to do this procedure, taking so much time from work and the fear of not being able to take care of my family has loomed the heaviest. I was mentioning this to some of my fellow midnight shift buddies, and their response was something close to this “Hey no, no, stop! Stop talking. Listen. Don’t worry about that stuff, you can’t worry about that stuff. You gotta fix you. You gotta worry about getting better. You can’t stress about that stuff because if you don’t fix you, you can’t help them. We’ll help you take care of them.”

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In thirteen years in, I didn’t know what that meant at the time, but I do know now. I felt a lot of guilt, and I felt selfish putting so much time into getting this treatment in Chicago and fixing me. But what they told me that night was exactly right. Maybe we wouldn’t be so financially hit this year, if I didn’t come to Chicago, but there’s no way I would have never made it to retirement without being medically retired first because of this is disease. I want to thank the guys that gave me that pep talk that night. I want to thank all the people who have done so much to get me here and to get me this far. I am grateful for the people who have helped me fill out forms and memos. I want to thank the Welfare and Recreation Department that put on the barbecue and all the people who contributed and donated. Our Welfare and Recreation Department is ridiculous. Those guys work hard to take care of us. Also, I want to thank my union representative that has saved my butt more than once at work, and is constantly giving me updates and making sure stuff is always moving along. There are too many to thank individually, but I’m so grateful to everyone at work for having my back. STN is second to none!

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I have always tried to get along with everyone at work. This usually works out. I try to keep in mind that I want people to have my back. Every once in a while a personality like mine is going to butt heads with another strong-willed personality. It’s just going to happen. Sometimes you get over it, sometimes you just learn to coexist. In our job, there are a lot of strong-willed personalities, believe me. You shouldn’t carry a gun, if you don’t walk around with an attitude that you’re going to win any dangerous situation you’re put in. You shouldn’t do this job, if you don’t believe you’re not gonna win any fight that somebody brings to you. I’m not at all saying you should walk around looking for a fight. You shouldn’t. The hope is that the fight never has to happen. If the fight comes, you will win. That’s the only acceptable answer that should be in everybody’s head. It doesn’t matter whether the fight is a fugitive with a gun, or some disease or sickness. You win!

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Day +5: Sleep Deprivation, Great Energy, Perfect Wife.

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Last night was a pretty rough night for sleep! They have us on a steroid called Prednisone to taper us down from the really high doses of IV steroids, and the stuff just seems to leave you wired all day. It doesn’t give me the high energy where I want to jump around and do stuff, but it just makes it impossible to take deep naps or really feel sleepy at night. When I finally went to bed, it was about 6:30 in the morning  and the sky was already turning blue! One of my goals today is to figure out a way to get sleep tonight!

So all of the water weight and swelling has finally started draining from my body. Twenty trips to the bathroom in the night doesn’t help a person to sleep. Here’s a fun fact: I peed 9.5 lbs of water weight, and I’m not done yet! Gotta say, it feels good to get all the chest and leg swelling down. It is so much easier to breathe.

I only slept a couple of hours and then waited for my daily meeting with Dr Burt. He came by himself again today and told me my numbers are all looking good and that so far everything is going great!  This is always a good way to start a day.

Today my white blood count is still TLTC, Platelet count is 71 (I’ve got to keep it above 20 to avoid a blood transfusion ) and hemoglobin is at 10.4 (transfusion at 8 or less). So this is great news for me today, because I won’t need a blood transfusion!

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I was able to get my morning spin in and get cleaned up. The nurse came by and gave me my Neupogen shots. I am anxiously waiting for these puppies to kick in and get my WBC up! Ten thousand bucks injected into my stomach in seconds for my insurance to pay luckily. That could have bought my dream bike!

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Liz came over and brought me dinner from this awesome Greek place around the corner. We were able to eat together and have a great time talking.  Sadly, this is her last visit with me. After we ate, she went on one last walk with me that was pretty sad, because I’ll really miss those walks with her. There was also a feeling of excitement knowing that I’m getting close to being done here too, and I won’t be far behind her.  After the walk, we came back to my room and talked awhile. We are both really sentimental people and we talked about all the experiences of Chicago that we will always cherish. We talked about our long walks around town to Millennium Park, the Bean, Sears Tower, the Chicago Theatre, and all of the parks and museums that we loved to take Olivia to. Also, the great times we had at our hotel and at my sister Laurie’s house. We were thinking about the special experiences we had in this hospital with our walks in the hallways and when she was taking Olivia to the parking garage roof for me, and Olivia showing off through the glass of the waiting room window. We reminisced about all of our fun talks, and hanging out here in my hospital room. Even though this experience has been a trial, it’s also been a massive blessing for our family. We’ve never had this much time to be able to spend together and bond. We were a family here, and that’s going to be special forever. This place has saved my life, or at least quality of life and given us so much hope have a bright future. Even though we’re  obsessed  with outside sports and activities, and I’ve been locked in here like a hamster, this place will always be hallowed ground for me and my family.

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Before Liz left, she did something that I’ll never forget for the rest of my life. She started crying and hugged me goodbye and told me that I was her hero and that she’s proud of me. Hearing this from Liz was the most special thing I could have ever heard her say. The fact of the matter is, she is my hero.  While I’ve been in here, she has been running all over Chicago, with a toddler, bringing me stuff I need, surprising me with little treats, hanging pictures all over my walls to keep me motivated, taking care of Olivia, still dealing with all of our bills and insurance issues, and a million little things I can’t even think of right now. She has been doing all of this while being pregnant! Liz is absolutely amazing. How I tricked her into marrying me, I’ll never know. The only reason I’ve made it this far, and the only reason I’m here in Chicago right now getting better, is because of her. Liz is the most amazing wife and mother. Liz, you’re my hero!

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I took comfort in knowing that she is not leaving me laying in bed and in the height of my  nausea. I’m no longer in pain and I’ve now had three days in a row of feeling really good and getting stronger. I just keep feeling better and better. So many of my daily MS symptoms that I’ve been feeling for years have totally stopped already. I’m down to one shot of Zofran a day for nausea, and I continue to improve. At this rate, I’ll be right behind her!

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Only two goals now for the day remaining.  I got my second walk in, which I did a mile in my record time since I’ve been in here. Also, after my walk, I noticed the first tingles of bone pain moving through my legs from the Neupogen shots. This only lasted few minutes before it went away. Second goal, early bedtime. I plan on accomplishing this with the help of my little friend Ambien. Good night!

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Days +3 and +4 Officially Neutropenic!

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Day +3

So Day +3 started out about like every day so far, with me having to call the nurse in for Zofran to stop the intense nausea that was upon me. As normal, this miracle drug cleared it right up! They also gave me my blood counts and I’m officially neutropenic, which means my white blood cell counts are 0.02. Normal WBC are between 3.5-10.5. So long old MS infected immune system!

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This was the goal of all the chemotherapy and rATG steroids that have been making me so sick. On the chart, “Absolute Neutrophils was marked as TLTC (Too Low To Count.) The goal now will be to get the white blood cell count backup to 1, and when that happens I get to go home! On day +4, I will start taking Neupogen shots again, and those will boost my white blood cell count much faster than it would go up on its own. It will  help me get out of here faster. These are the shots that gave me the really bad bone pain a couple of weeks ago. Now I welcome these shots, if it means getting out of here sooner. A perk is that in the hospital, the nurses have better pain medications than what I was getting last time.

Other things on the chart that we are watching closely, are my platelets and hemoglobin. If my platelets drop below 20, then I will need a blood transfusion. This is extremely common, and most likely will happen. Very few get out of here without a blood transfusion. Normal platelet counts should be between 140-390. The platelets are what helps the blood clot if we get cut, thus the reason Dr Burt is so big on me getting up very slowly, and making sure I don’t fall and hit my head. My platelets are still at 133. I’m dropping, but still well in the safe zone from needing a transfusion today. My hemoglobin levels are at 11.5. Normal range for hemoglobin is 11.6 – 17.5. If I fall below 8. 0, then they will do a transfusion. These numbers are also looking good for me. I’ll continue to talk about the chart a little bit more as the days go on, because now everything here has become a numbers game. What happens to me each day, mostly depends on these numbers, and trying to get that white blood cells back to a 1!

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So after yesterday’s little performance of not checking all the boxes on my chart, I was glad to be feeling better today. Surprisingly, after I lost my strength yesterday, one of the things I was unable to accomplish was to sit on the spinning bike for any amount of time and also go on my second walk. When in training, it’s common to over train and not be feeling well. People always tell you it’s not a big deal to skip the gym workout, run, or ride. People say that also here in the hospital, but that is actually true in training, here it is not. The doctors tell you to do these things, because they are small things and they know what makes you feel better. Even if you feel like crap, you make yourself just get up and move around a little bit. You’ll feel better in a way. The walk or the ride doesn’t say I have to walk a mile, or bike for an hour, it just says to do it. If you don’t, it’s not like they come in and lecture you, but every nurse I’ve talked to has told me that the people who stay moving are the ones that get out of here faster! Just getting out of bed, putting the stupid gown, gloves, and mask on, sometimes already feels like a major accomplishment when you’re feeling weak, shaky, or nauseous, but honestly doing that is about 95% of the battle! Yesterday was probably the highest fatigue I have ever felt, and when you have MS you know a level of fatigue that most people just don’t understand.

Despite being as active as I have been in the past, a fatigue day shows up every couple of weeks. At this point, all of my plans are scrubbed, but I know the next day I’m usually back to myself. Of course, even the next day, as I start to move, I would usually feel it a little, but once I could get my heart rate up, I could be back to normal. I can’t tell you how many times a fatigue day has come the day before race day. For a while, I would think my races were doomed, but believe it or not, more often than not, I have a great race. It is unbelievable that I could have felt so bad just 24 hours before. In fact, I’m pretty sure I’ve hit some of my personal records the day after a fatigue day!

Once I started my first walk today, I immediately started to feel pretty good. I went right from my first walk into my spin bike session, and that went great. Today’s goal on the bike was to just spin and try not to work up a sweat. The only reason I did work up a slight sweat was because the plastic gown, gloves, and mask get really hot.

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Liz’s sister, Jen is in town from Las Vegas, so she can help babysit Olivia, so it’s been nice because I’ve been able to have a few visits from Liz a day. I can’t say enough about how much of this has boosted my morale! Knowing Liz coming to see me makes me want to get up and have some things accomplished, so I’m feeling good when she does see me.

Jen actually dropped by too, and brought me some gigantic amazing chocolate donuts that only Chicago would think about creating! The company was great, and I just can’t say enough about how much we appreciated Jen coming when she did. I know it was also great for Olivia having someone to take her on play dates to the Children’s Museum, Lego Store, and parks.

The rest of the day continued to go well, and I was able to accomplish everything on my list. Also, for the first time, I was able to make it through the night without the Zofran. So once again, the word roller coaster properly describes how things are going here.

Day +4

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This morning, Liz came over early because Jen had to leave today, so she was here when Dr. Burt makes his morning rounds. On the weekends, Dr. Burt comes alone, because his staff are all off, but it was great having more time to talk to him with Liz there, because she always has good questions that I never think of. Plus, she’s better at conversation in general. Also, we haven’t gotten the famous picture with Dr. Burt yet, so we took a selfie with him, since his staff wasn’t there to take the picture. We also took Liz’ 25 week belly shot, using the agenda board in room. Usually, we use the marker board in the nursery, but since being in Chicago we’ve had to be creative. It’s getting pretty exciting thinking about this baby coming soon. I am so anxious to have this behind me, and to be able to focus on feeling better and ready for his arrival in July!

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During Liz visit, Jen called and told us to look out the window and she was on the parking garage roof with Olivia, so it was fun to get to watch her run around a little bit. It always makes me so happy to see that little girl bouncing around.

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I still needed the shot of Zofran this morning, because the nausea came back, but like yesterday, I was fortunate to be feeling good again. My numbers are still continuing to drop. My white blood cells are 0.1., Absolute Neutrophils is TLTC, Platelets are 112, and Hemoglobin is at 11.0, so while I am totally Neutropenic, I’m still looking like I’ll avoid a blood or platelet transfusion today!

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After Liz left, I was able to get a good thirty minute spin on the bike, and then I got a good walk in afterward. As soon as I came in from my walk, I was sitting and cooling off, and in walked my mom with my nephew Nick. My mom just flew in from New Mexico and Nick flew in from Idaho. We had a fun time talking, and it was nice to be able to show them my setup here. I found myself almost starting to get emotional about things that are not even emotional. Fortunately, it is a huge and actual side effect of the drugs I’m on, but it’s so funny to see how weird my body is acting to things while on all these medications! Of course, there is also that little thing that formed from birth which makes you feel comforted, when you see your mother and you’re sick. My mom is an amazing woman. She raised ten kids in hard circumstances, and still was fought over by all ten of us about who gets her attention. I still go to her for haircuts, because I know it’s the one way to get a one on one conversation (and back rub). There are so many moments and conversations in my life I will always cherish because my mom was in them. Without a doubt, I get much of the fight in me from her. I’m definitely a momma’s boy!

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When they left, Liz was able to make the Olivia switch with them and come see me for a few minutes. Liz had to check out of the hotel we’ve been in, so she is going to go back to Aurora with my sister’s family to save some money.

Oh forgot to mention, while my mom was in my room, the nurse came in and started the Neupogen shots. I was telling my mom that Neupogen shots are really expensive. And the nurse said “I just injected $10,000 into your stomach.” It was funny to watch my mom’s eyes when she said that!

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When everybody left, it was back to business as usual. I got a nice shower, nap, and my second walk in. It felt great to finally get two days in a row of feeling good and accomplishing my goals. I did have some small digestive issues, but nothing a few more prescription drugs couldn’t solve. As I’ve been sitting here trying to finish today’s blog, the nausea has still crept back up, and I’ve been injected with Zofran. I have also taken an Ambien, so hopefully I can wrap this up before the Ambien kicks in.

I’m just going to end on this note that is working for me. For the people out there that are going to have this procedure done, and are looking for the best way to do it, I want you to try to stay moving. I want you to try not to spend too much time in bed. I know there are people down the hall having the same thing done as me. Some have been more sick than me, to this point. Some have already had blood transfusions, but they are still putting on the gown and walking around and working to make it better. I know they are still moving around and that’s how we’re going to get out of here. Last thing, is allow the things that make you happy to help you, instead of making you sad. I could be moping around because I can’t see Olivia, but I remember how lucky I am to be here and that I’ll have many quality years with Olivia to come. It’s all worth it.

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One last thing, I got a few encouraging shout outs on Facebook from cycling teammates, mountain bike buddies. and even people at the “Jumping at the Bean” page. I can’t tell you the boost it gives me when I know people out there are thinking of me in my situation. I get so excited to get out there next time! It’s hard not being there, but these people know me enough to know I’ll be back! Little things like this mean the world me! Thanks guys!

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