Day +9: Getting Out. This is not a dress rehearsal. This is it. Your life.

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Okay, this post is coming really late, so I’m going to give a quick disclaimer. After getting out, I needed a couple of weeks off to enjoy being home and to start my recovery process here in Las Cruces. I definitely needed some time to enjoy being out of the hospital and spending time with my family and enjoying life on the outside. Anyway,  here’s the last day in the hospital.

DAY +9

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Last night, after they stopped the blood and platelet transfusions, the nurse said they wanted to do a second blood draw of the day, to make sure everything was looking better. When I got results of that blood draw, there was some hopeful news.  My white blood cell count went up from too low to count to 0.06! This was really a good sign, because once the WBC starts coming up it comes up quickly. So suddenly I had real hope of getting out tomorrow! After such a hard day, this was music to my ears because I really didn’t expect to get out so soon, and mentally I was prepared to go a while longer.

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When I woke up this morning, the nausea was back, so once again I needed a shot of Zofran, but the nurse also brought the results of my blood test. My WBC was up to a 3.3! I know I’ve said this a couple of times before, but it only needs to be at a 1.0 to get out of the hospital. I can’t tell you how excited I was to hear this news!

When Dr. Burt and his staff came in, he let me know officially that I would be going home as soon as they went over discharge papers with me and I thanked him for treating me with this miracle procedure.

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I ordered my breakfast and started getting my stuff together and called my mom, so she and Nick could come pick me up. I was so worked up about getting out and getting ready, that I never did eat much of my breakfast. As exciting as it was to get out, it was still kind of sad taking down all the pictures that motivated me the whole time I was here. Even though it was hard being in the hospital and not being able to go outside, this hospital room will always have a lot of sentimental meaning to me and be hallowed ground of the treatment I had done here. I will always remember the second chance it gave me on having a normal life. I’ve had so much time to think about while I was here, and so much time to be thankful for how lucky I am. I’ve also had some great memories with Liz and my family that visited me during my stay.

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(Kaitlyn works with Dr. Burt)

Kaitlyn came back in and went over the discharge papers with me to walk me through all the new medications. I’m going to have to take these medications for the upcoming months to protect me from getting sick or infection. She also told me I had no physical restrictions (which I loved by the way)!  All of my restrictions involved avoiding germs and people. I can’t change diapers or take out the trash for three months. I asked her if she can make the diaper thing go six months, so I can enjoy this restriction for a little while after having the new baby in July. I have to avoid large crowds and sick people, obviously. I can’t go in public swimming pools for three months. Also, I’m on the pregnancy diet, meaning I have to avoid sushi or open buffet eating. Every Monday, I’ll have to have my blood drawn back home and they will send the results to Northwestern and Kaitlyn will contact me and let me know how they are doing. If I need anymore transfusions or whatever, they will contact me. She is going to be my point of contact every week for the next year.

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The next step was taking the PICC line out of my arm. This is something I’ve really been looking forward to and really brought the reality of getting out to life. Taking it out was a little intimidating, because the thing was all the way to my heart, but I was so ready to have it out that it actually didn’t bug me too much.

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Afterwards, I headed down the hall to say goodbye to my buddy Don. We came into the hospital on the same day and  have been running support for each other ever since. It’s been great having Don here so we could compare numbers and symptoms and try to gauge where we were at and how we might be feeling the next day. I think we both handled this pretty well.

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When my mom and Nick showed  up,  I took the last things down off the walls. Last of all was the sign that Olivia and Liz made me for my last race that said “Go Dad!”

 When it was time to leave the hospital they asked me if I wanted a wheelchair to get down. I told them they would have to kill me if they’re going to put me in that chair. I think you know enough about me now that I don’t have to explain that statement or why I made it. When I came to Chicago I said “I’m here to win.” I haven’t been doing all these boring walks in the hallway so when I go out to feel the air in my lungs for the first time I’m feeling it from a wheelchair when I’ve been busting my butt the last 5 years to make sure that doesn’t happen.

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As we were leaving, I had made arrangements with my friend Susan that I met before I went into the hospital to meet us at The Bean,  so she could get a picture of me jumping at The Bean and show me out of the hospital. I have written about Susan a few times throughout this blog and mentioned that she has been one of my biggest fans while I was in the hospital, and that she herself had a stem cell transplant and is a survivor after having Hodgkin’s Lymphoma.

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As we were walking in Millennium Park towards The Bean,  I had to walk up a long ramp. I was totally out of breath and sweating and I started getting my first feeling of how difficult this come back is going to be at first. While taking a few pictures of jumping, my knees were so shaky that I could barely get off the ground. I think the adrenaline of being out is what got me there. My mom and Nick also jumped with me, which I really thought was cool. My mom is such a good sport and such a great supporter. The fact that she showed up embarrassing herself with me really meant the world to me. It was fun to talk to Susan for a little while and get to know her better and have my mom get to know her. She really has been awesome and lifted me on many days in the hospital.

On the way to Aurora there was a lot of traffic, and I started getting pretty sick. I tried to lay there with my eyes closed during the drive, but I could tell I was getting close to throwing up and all my anti nausea medication was packed in the back. It didn’t help that I had skipped breakfast and had medications in my stomach. Fortunately, we were able to go to a Chili’s and I was able to take my medications and get some food in my stomach.

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It was great to get back to Aurora and be able to take a nap in a nice bed. Plus, spring had finally arrived while I was in the hospital and everything was green and blooming. Taking walks in Aurora really beat laps in the hospital. Every time I finished a walk, I would sit on the steps and enjoy the air. It felt extra good blowing on my bald head.

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I got out of the hospital on a Thursday and stayed in Aurora until Monday. During this time, I rested a lot and enjoyed my time with my sister’s family, the Zapatas.

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I can’t say enough about all the Zapata’s did for us while we were in Chicago. I know I’ll forget something, but I will mention a few things. They saved us so much money by letting us stay with them on the days we didn’t have to be at the hotel. Plus, Liz and Olivia would go stay there on the weekends, when I was in the hospital. They fed us, gave us passes to the museums and the aquarium, got us tickets to a Bulls game, and Laurie would take off work and come help babysit Olivia, so Liz could be with me on some of my bigger days in the hospital. Our family really bonded with them during our stay here and I’m glad I get to see them at the six month and year checkups.

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On the flight home, I still had to wear a mask because of all of the germs that could be circulating on the plane, so that kind of sucked.  That’s a long time to wear a mask, but it was worth it knowing what was waiting on the other side. When I landed and was able to see Liz and finally hug Olivia again, that was the greatest feeling ever. Being separated from that little girl was one of the hardest things I’ve ever had to go through, but it was all well worth it. I definitely had to keep my mind positive and not think about it too much while in the hospital, or it would have made for a really long stay. It was all worth it and it will all be worth it in the coming years when I’m helping her learn to ride a bike and doing all the other things that I’ll be able to do by not having to deal with MS and the all the problems it causes.

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Everyone is different on how they handle the stress. I don’t think there is a wrong way, as long as its working, but with this disease, I feel like you need to be more aggressive with it than it wants to be with you. If you just sit around thinking about how you have MS, and how tired it makes you, or how all the side effects are draining you, then it’s going to win.

I’ve gotten to know a lot of people with this disease since I’ve had it and I look at their Facebook’s and every post is about Multiple Sclerosis. I’m not saying that’s bad, but for me I just can’t think about it all the time or I would start to feel more sick than I already was. The symptoms are there, or were there. Every night I laid in bed my legs are tingling and numb. Every time I was walking or racing my face would go numb or I would feel electric shocks go down my spine, if I lowered my head. I could go on and on at all the little reminders. The thing was that it makes you more tired than you are and feel more out of shape than you are, so you just have to work harder so you don’t feel so out of shape and so tired all the time.

If every post I put on Facebook was about a MS then I think I would think about it too much and just be expecting the next thing to happen to me. I think it’s good to raise awareness and help other people with the disease and I feel like I’ve done that. If I hear of anybody that has it, I try to help them and give them advice on what works for me. I will show up and participate in Bike and Walk MS events, and for the rest of my life continue to do this until there is a sure cure.

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Liz, Olivia and my mother in law even participated in a Walk MS event when I was in Aurora waiting to come home. If I see something positive on MS that shows hope I will gladly post it on my page. I will tell people about the stem cell transplant I received in Chicago any chance I get.

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I’m not ashamed of having MS, it’s just not something I can’t dwell on all the time. Most people didn’t even know I had it
until I started planning to come to Chicago to stop the progression of the disease. I mentioned before that I really didn’t get seriously into biking and triathlon until after I was diagnosed, but if you ask most people what they have known about me for the last five years, they would tell you that I’m obsessed with cycling and triathlon, not overwhelmed by MS.

During this journey I’ve had to find inspiration to keep me going. I’ve searched for athletes that are going through the same kind of things that I’m going through. Along the way, one of the athletes I found that had the exact same strategy as me was Lyle Anderson.

You Tube link about Lyle Anderson:

https://youtu.be/NyAK_f9xLBw

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Lyle was diagnosed with MS back in 2006. When he was diagnosed, he had a ton of symptoms, including vision and bladder problems, trouble walking, memory, cognitive problems and more. His future looked grim. Before he knew it was MS, he actually thought he was dying and they were going to find a tumor somewhere. When he found out it was MS, and thought he would surely end up in a wheelchair, he started to be active. He lost weight and started training. He made a goal to do the Saint George Ironman. The St George Ironman was one of the hardest Ironman’s they had, and since then they’ve dropped it to a half Ironman, but before they did, Lyle trained and finished default distance for the St. George Ironman.

Shortly after that, I started talking back and forth with Lyle about different races we were doing and how we both felt our strategy was the way to go to fight this disease. He suggested to me that I should train and do a 70.3 half Ironman, so I decided to sign up for the one in Boulder, Colorado and I got a bunch of my buddies to come do it with me.

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After the half Ironman, I realized that I’m much more of a sprinter and an Olympic distance triathlete, than I am a long endurance athlete. The full Ironman is still on my bucket list and I feel an obligation to do one, to show people that if you train, you can accomplish this with MS. I was supposed to do my full IronMan this year, but because of my treatment and Chicago, it’s going to get put on hold for a couple more years.

Training for an Ironman is no easy job and it takes a lot of time away from the family. The Ironman starts with a 2.4 mile swim, then is followed with a 112 mile bike ride, and finishes with a full marathon run of 26.2 miles. Now, when I do my full Ironman, it will be to show my comeback from this treatment and that I’m able to recover and beat this disease. That being said, I really am not excited about doing the Ironman, because of the pain and suffering I know I will go through, but I feel like it is something I must do to inspire others the way people have inspired me.

In 2013, Lyle was picked as one of the Kona inspired athletes to do the Kona Ironman in Hawaii. It was awesome watching him train and compete in this race. It was inspirational to see a person that has my disease make it to the biggest Ironman stage in the world and do so well.

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Last fall, Lyle came down to New Mexico and rode the Pedal Los Pueblos Bike MS ride with me in northern New Mexico. We had a fun day riding and talking about what makes us tick. It’s really rare to find somebody like you with Multiple Sclerosis that is beating the odds because of intense physical activity and the will to fight. We talked about how we both forget we even have the disease, because we get so caught up in training and what we want to do next. So we both want to make a difference and help raise money and help people with the disease. I don’t feel like it consumes either one of us to where that’s all we think about. It’s more fuel to keep going and try harder than we thought we could.

The first day of that event, we even took a wrong turn and rode a hundred and ten miles instead of the scheduled 100. Lyle’s bike malfunctioned and he was stuck in one gear and did the last 20 or so miles without being able to shift. That dude is an Ironman! I’m looking forward to doing many more rides with this guy and we are both planning to do the Oceanside 70.3 half Ironman in California next year, on exactly a year to the week of when I was doing my chemotherapy in Chicago.

If anyone is ever looking for inspiration, I recommend getting on YouTube and watching the Ironman. Especially years 2005 to the present. The Ironman is full of inspirational stories, underdogs, and people fighting disease, and other hardships in their life. They are using Ironman as a way to help them overcome these things. Sometimes you see people that are doing Ironman that have already received the death sentence, whether it be a tumor or another fatal disease or condition. Seeing these people finish this race, or at least attempt to finish this race, is one of the most amazing things ever. You see people who have lost their legs, become paralyzed, wounded in war, or have their life ripped from them in another way.

One of the most inspiring of these athletes was John Blais, a poet athlete with ALS that completed the Ironman in Kona just two years before the disease would kill him. He said he would finish the race, even if he had to be rolled across the line. When he got to the finish line, after racing for 16 1/2 hours, he laid down before the line and rolled across. Since this time, many athletes will roll across the finish line in what is called “The Blazeman roll” to honor John Blais. One of my favorite Ironman champions, Chrissie Wellington did this every time she finished the Ironman, an event she never lost.

You tube link:  https://youtu.be/FjX6FAUDYyY

Not everybody gets a second chance. I was diagnosed with MS the same time one of my mountain bike friend’s, Doug was diagnosed with ALS. The initial symptoms to MS and ALS are very similar and when you’re finding out you could have one of them, suddenly you find yourself actually hoping it’s only MS and that you have a chance to fight for your life. Not everyone is so lucky. I hope I will never take my life for granted again. That’s why quality of life is so important to me because I was faced with losing that.

In closing I’m going to end with a quote from John Blais that’s at the end of the 2005 Ironman.

Live…
More than your neighbors.
Unleash yourself upon the world and go places. Go now.
Giggle, no, laugh.
No… stay out past dark,
And bark at the moon like the wild dog that you are.
Understand that this is not a dress rehearsal.
This is it… your life.
Face your fears and live your dreams.
Take it in.
Yes, every chance you get…
come close.
And, by all means, whatever you do…
Get it on film. -John Blais

John Blais in the 2005 Kona Ironman

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One thought on “Day +9: Getting Out. This is not a dress rehearsal. This is it. Your life.

  1. Good Thursday Morning! I read this post as I am on the train commuting into Chicago and I am sure fellow commuters are wondering what I was reading because I cried and smiled and then smiled some more! Your attitude I about life I do adore! #ifonlyeveryonehadit #kickit ♡

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