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

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!

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.

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

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

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!

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.

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.

 

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. 🙂

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.

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.

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.

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

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!

Sun New article

Paying it Forward

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.

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.

Maddy The Mighty

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.

Maddies Mighty Minions

 

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.”

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.

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.

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”

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.

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!