Another good month goes by transfusion free!

Another month has come and gone, but this past week was really great. Things with me are going well. I haven’t had a transfusion in a month, which is a good sign. My doctor visit last week was good; while my counts are still low, they are stable and ‘live-able’. That means that I am still anemic and prone to fatigue, as well as at increased risk for bleeding and infections. But I don’t wear a mask anymore…not even on planes!

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But it also means that I’m not in dire need of a bone marrow transplant, which is the good news. These new low levels may be my new life. I may still need transfusions, but it’s great news considering where we’ve been. My bone marrow seems to be rebuilding, but we really don’t know how much it will rebuild itself. My latest numbers for those of you keeping score:

ANC:1400, HGB: 9, PLATELETS: 24

In fact, my doctor isn’t sure why I’m better. Was it the horse serum?

horse-yuck Spontaneous recovery? Exercise? Positive thinking? Prayer? Probably a little of everything. Since we really don’t know what causes Aplastic Anemia most of the time, the treatment is often a shot in the dark. And the recovery is probably due to a combination of factors.

I’m still traveling every week, much to Angela’s displeasure, but I remain germophobic. In fact, I just got back from 2 consecutive international trips for work. I try to exercise every day, often walking 3 miles in the morning with my ‘Green Willow Crew.’ And of course, I’m back to brewing beer in the BrewShack! My White Ale-igator was the best ever!

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But this past week also had 30 more blood donations for my cause at Runnels School where my children attend. Thank you to everyone that helped coordinate the event as well as those who donated.

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I even got to talk to representatives from the national Aplastic Anemia association about doing more to promote awareness of this disease through my blog. I’m so happy that this blog has had such a great influence. Please consider donating to their Foundation; bone marrow failure diseases are so rare, they don’t have the big exposure of other organizations dedicated to helping patients with Aplastic Anemia, Myelodysplastic Syndromes, and Paroxysmal Nocturnal Hemoglobinuria (see, I told you they were rare!)

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And thank you to my friend Ray Castle at LSU who coordinated more bone marrow registrations with the athletes at LSU last week, despite being sick himself (yes, I stayed away from him!). A representative from the national Be The Match foundation even came here to discuss taking our program at LSU national so other schools can register their athletes in the registry.

That brings our total up to about 200 since Baton Rouge Mayor Kip Holden announced his challenge to sign up 250 registrants in 3 months. But we’re not done yet…

I’ve also nearly reached my goal of raising $2000 for Be the Match which will cover the cost of adding 20 people to the bone marrow registry. Please help us cover the cost for adding our 200 people to the registry by donating here: http://www.bethematchfoundation.org/goto/bonemarinara

 

Hope, help, health, healing, and happiness

Last month, I talked about my “5-Hs” that I pray for each day, and I wrote about helping. As you can see above, there are a lot of people out there willing to help. You just have to ask; although you sometimes have to ask the right way.

This month, it’s about health. It goes without saying that good health is the key to a good life. But even in poor health, you need positive thinking to keep you going, and to get you back on the path to good health. It can start simply by stopping smoking and reducing alcohol consumption, but I believe the biggest factor is to start exercising.

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I believe that exercise helped save me. I may be biased since I’m on the American College of Sports Medicine’s “Exercise is Medicine” committee….but we all know the importance of exercise for general health. For years, I’ve supported exercise for treating chronic diseases, only to suffer one myself. Unfortunately, there’s no research on exercise and Aplastic Anemia, but that hasn’t stopped me from staying active.

And, being the research geek that I am, I’m writing a paper on Exercise and Aplastic Anemia to help increase the awareness of the importance of staying active with this disease, even if there is no hard research one way or another. Until someone proves me wrong, my hypothesis is that EXERCISE IS MEDICINE!

I Corinthians 9:26-27. I run straight to the goal with purpose in every step. I am not like the boxer who misses his punches. I discipline my body like an athlete, training it to do what it should.

We often take our health for granted. I know I did. I think about how my body reacted to my sepsis during my recovery. We always say that the better shape you’re in before you have surgery or get sick, the easier your recovery. Luckily, I was relatively active before I got sick. In addition to exercising for your health today, you should be thinking about your health tomorrow!

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I’ve tried to get back to jogging, but my leg muscles just don’t seem to have the oxygen they need. Hopefully I’ll get to get back to some strength training again soon as well. I love telling people that I walk 3 miles a day, 5 days a week despite having my disease. If that doesn’t motivate you to get moving….

MOJO!

Help!

I just realized it’s been a month since I last posted on BoneMarinara.com. I guess you can say, “No news is good news.” But I’ve been busy with a number of ‘firsts’…my first beer brewed since getting out of the hospital (Anemia Ale, of course) and my first 5K race (had to walk 95% of it)…and all this past weekend! And now I’m planning for my first trip out of the country, although my family isn’t too happy about that.

turkey-hagiasophiaThis week is the 6-month mark since I left the hospital. The doctors at NIH were looking at my blood counts 3 months after my initial horse-serum treatment and talking about bone marrow transplant because I wasn’t responding as they hoped. I always believed I was off schedule because of my sepsis, so I gave myself 6 months after April 10 (my discharge) to reach levels of a responder. (Oct. 10) I think I’m there.

While I’m not cured yet, today’s blood tests were very encouraging. I haven’t needed platelets in about 2 months! They are at the highest levels since my discharge in April (now 27; need to be at 150). My white blood cells are also at higher levels (now 2.8; need to be 4) and my ANC is 1400 (1500 is low normal). I still need blood transfusions, but the length in between them is slowly increasing (another good sign.)

tomato-transfusion

Everyone asks, “How are you feeling?” Well, I FEEL GOOD!

Everyone wants to feel good. Some feel good the ‘right way,’ and others feel good the ‘wrong way.’ (I’m sure you know what I’m talking about.) I’ve found that 5 simple things can make me feel good no matter what else is going on.

I pray each morning and thank God that I’m here. Recently, I’ve started to pray for these 5 things; the “Five H’s”: Health, Healing, Happiness, Hope, and Help. Today is one of those days when my prayers were again answered…I feel my 5H’s have been fulfilled today. My health is relatively good; my body is healing; I have hope; I’m happy, and am helping others.

So I want to write upcoming blogs on my 5H’s. Today is “Help.”

I’ve always enjoyed helping people. In fact, that’s one of the reasons people want to be a Physical Therapist like myself. (HINT: if you are applying to PT school, NEVER say you want to be a PT because “you like to help people”. That’s what everyone already knows!)

As you know, if you’ve followed my blog, I wanted to make my experience helpful to others who may suffer from similar illnesses, but also help anyone who needs a little motivation or inspiration. I can’t tell you how many people have reached out to me to share how inspiring my blog is to them and how it’s helped them to get perspective in their lives.

But I wanted to do more than just write a blog. I wanted to make a difference beyond that. So, we started doing blood drives…not just to help me, but to help others as well. Raising over 250 pints of blood this year in 3 states, I’m sure we’ve helped many people across the nation.

And the way I think I’m really helping is to increase awareness for bone marrow donation and get more donors in the registry. I have been amazed at how little people know the facts about bone marrow donation. Even though my own bone marrow transplant is on hold because my numbers are improving, I will continue to promote donation for the thousands of others who need a transplant.

Within the past month, I’ve helped with 3 drives, getting about 65 swabbed. Thanks to the LSU Gymnastics team, St. George Fire Department, and Most Blessed Sacrament Church Mens Club, as well as those who helped me like Ray Castle, Darrell Ourso, Dustin Yates, and Madonna Phillips. Since the Mayor of Baton Rouge issued his challenge of 250, we’ve been able to get 144 kits for Be The Match.

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“Help me help others.” I ask God to help me to do His work, whether that’s getting bone marrow donors in the registry or making time to write this blog. I am convinced His plan for me is to help promote bone marrow donation awareness. If you haven’t yet, please help someone else by getting swabbed for the bone marrow registry.

Isaiah 41:10 Fear not, for I am with you; Be not dismayed for I am your God. I will strengthen you. Yes, I will help you. I will uphold you with my righteous right hand.

And I’m happy to announce that I’ve almost reached my goal of $1000 BeTheMatch fund-raising, so if you’d like to help contribute financially, please visit my donor site at: http://www.bethematchfoundation.org/goto/bonemarinara

You can also help by donating to the Aplastic Anemia & MDS Foundation.

Pay it forward. No matter how busy you are, how bad you feel, or if you think you can’t help, you can! And you’ll feel better for it.

Oh, and don’t forget to ask others if you need help. That’s what we are here for. To help each other. It’s not a sign of weakness…it takes strength to ask for help. And I wouldn’t be here to help people today without the help of so many others…

 

Mission Accomplished!

Set goals. Achieve goals. Repeat.

That’s how I get through these uncertain times.

My blood counts go up. My blood counts go down. It’s like a yo-yo each week. The emotional roller coaster I’ve talked about. Last week, everything was down again after we were very encouraged by the highest counts and going 4 weeks without a transfusion (that’s a really good sign).

setgoalsWhile I was in the hospital, Angela was a fantastic goal-setter (What would you expect from a physical therapist?) She would write them on the whiteboard for me each day. And made sure I did them. From the small goals of even getting out of bed 3 times a day to the big goals of walking 3 times a day for 20 minutes at NIH. It feels great to look back and see how my goals progressed.

My biggest goal at the beginning of the year was to attend my annual research meeting, TRAC, in Park City Utah in August.

Being at TRAC wasn’t just for me; it was for the TRAC ‘family.’ I started this meeting 16 years ago and treat this group as family.  So I did everything I could to have the health and stamina to get there.

Mission Accomplished.

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I even got to spend some great quality time with Angela and take in the wonderful sights. She deserved a vacation after all she’s been through the previous 6 months.

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Another goal of mine was to get back to brewing beer at the Brewshack. My last batch was in January before I went into the hospital for 2 months. I didn’t know if I would have the samina to brew for3 hours, but with the help of Chase, today I brewed my “Anemia Ale.” (Come by in about 4 weeks for a taste!) The By-You Brewshack is Back!

Mission Accomplished.

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Speaking of reaching goals, our new friend, Steve Matchett of MarrowQuest.org, completed his quest a few weeks ago, riding from the top of the Mississippi River to the mouth of the river in Venice. Special thanks for my friends at the Faux Pas Lodge and Venice Marina for helping Steve out.

In addition to Steve’s goal of riding to the mouth of the Mississippi River, he had another goal of having Sally Ann Roberts of WWL TV in New Orleans sign his bike on the morning show that week. You may remember that Sally Ann was a bone marrow donor for her sister, Robin Roberts a few years back. Mission AccomplishedWatch the video here:

When Steve finished his ride, he was greeted by lots of bone marrow patients, donors, doctors and nurses at Ochsner Hospital in Jefferson last week as well. An awesome finish!

SPM-at-Ochsner-Cancer-Center-New-Orleans-8.19.14-1024x576

Through Steve, whom I had met just one week prior to his finish, I got to meet some great people from the Hendrick Marrow Program as well: Courtney Hurd, Pam Heaton, and Paul Spadaro. We all enjoyed dinner with a few more friends (Jeff & Susan Heartling, Kristin Akin, and Blain & Cheri Efferson) at Palace Cafe that night (one of my favorite New Orleans restaurants).

I told Steve how amazed I was at accomplishing his goal, particularly  as an ‘older adult.’ I’ve been promoting physical activity in older adults for the past 10 years. I told him that he has a great story of a physically active older adult using exercise to promote a cause.

SPM-100-Feet-To-Go-south-of-Venice-Louisiana...8.18.14-1024x694The biggest thing that impressed me about Steve was the fact that he didn’t ‘have skin in the game.’ He wasn’t riding to raise money or awareness for something he personally had. He saw a need for marrow donation and took it upon himself to do something about it. Steve set a goal and found a way to accomplish it pretty much on his own. More importantly, his goal helped others reach their own goals. I was honored to be a part of his quest.

Steve said, “You can’t jump half-way over a canyon.” When you set a goal, you have to go all the way or you won’t make it… Although Evel Knieval tried.

When you set a goal to do something, it’s all or none.  It’s kinda like Yoda said:

Yoda

When you set a goal, commit to it. It’s not always easy to accomplish your goals. Commit yourself to doing whatever you need to do, particularly if you’re doing it for someone else.

Of course, there are factors you can’t always control in accomplishing your goal (like your blood counts). If you commit to something, follow through with it with everything you have, even if you feel like quitting. Accomplishing goals always feels better than quitting.

Don’t give up. Don’t ever give up.

Obviously, we don’t always reach our goals. You won’t succeed 100% of the time. Remember, in baseball, being successful 4 out of 10 times is an amazing accomplishment! And even though you fail, you continue to get in the batters box to try again.

Plan ahead and be ready to achieve your goal. Expect success, but prepare for failure….like Evel Knieval did.