2014 was the worst of times, and the best of times (with apologies to Charles Dickens). While 2014 really sucked in terms of my health, it turned out to be a great year for me, my family and friends, and many others whom we may never know.
Reflection in a new year should also remind us of what we’re thankful for. We should always be thankful; not just at Thanksgiving! So, I wanted to reflect on what I learned in 2014, and share my thanks with the hundreds of people who helped me this year.
I learned a lot in 2014, and we actually did many good things as a result. Things that weren’t on my original list of resolutions. God threw me a curveball, and I hit it. Maybe not a homerun, but at least a triple.
Although I had already made my 2014 resolutions, I made another resolution on January 7, 2014 when I found out I had a life-threatening condition…which then got worse with the sepsis. Even though I didn’t have the confirmed diagnosis on Jan. 7, I knew that I was going to make something good come of this ordeal…. Although I couldn’t imagine what it was at the time. God had His plan.
“It’s not what happens to you, but how you react to it that matters.” (Epictetus, Greek Philosopher AD 55-135).
Ever hear the saying, “Make chicken salad out of chicken sh*t?” What if we all resolve in 2015 to turn bad situations into good ones? Learn from our experiences. Educate others. Help those in need. Make good.
I learned a lot last year about things I probably would never have known; and if you’ve followed my story, I guarantee you learned something new as well. While I never wish my experience on anyone, sometimes it takes bad situations to create change for the good. Someone once told me, “Cancer is a beautiful gift wrapped in a very ugly present.” I look at the influence the late Stuart Scott had on me and millions of others in his battle with cancer.
1. I learned that patients that suffer from rare diseases like aplastic anemia are at a disadvantage. Especially when they don’t know what causes it; if they don’t know the cause, how can they know the cure? Not-so-rare diseases like heart disease or cancer get lots of funding and research, as well as a lot of attention from the pharmaceutical companies. These drug companies obviously aren’t going to invest a lot into research for a disease that only affects 5 in a million people per year. I’m thankful for the AAMDS organization that provides support for patients and families of bone marrow failure patients. It’s important that people are educated about rare diseases and that they help fund these associations that support patients and their families.
2. I learned that the National Institute of Health (NIH) in Bethesda is the best place to be if you suffer from a rare or complicated diagnosis. The NIH is a pure research hospital funded by your tax dollars. Find out if there are any research trials going on at the NIH or other hospitals by visiting www.clinicaltrials.gov. Not only did I get the best treatment, but I wanted to participate in a research project that could help others as they look for a cure. I’m thankful for the doctors, nurses, social workers, therapists, and everyone that helped save my life. Rather than just have cold water poured on you, support research for a cure by donating or volunteering.
3. I learned how important blood and platelet donation really is. It’s been a year since I had my first blood and platelet transfusion. I used to give blood many years ago, but stopped. I never really knew how many people rely on transfusions like cancer patients, whose bone marrow can also be killed off in the process of chemotherapy and radiation (like Robin Roberts). Through efforts of family and friends, we raised over 200 pints of blood and platelets at 5 blood drives across the country. I and countless others rely on blood transfusions to live. I’m thankful to everyone that donated their blood and platelets for me. Remember that January is Blood Donor month, so please donate blood or platelets this month if you can!
4. I learned that bone marrow donation is not what I thought it was, and I’m sure you did too. A matched sibling is the best hope for a successful transplant; but 70% of transplants are from un-related donors! Even though I don’t need a transplant right now, I want to continue raising awareness and adding to the registry. We all know how critical bone marrow transplants are, but I didn’t know much about the process. Once I found out how easy it is to get on the registry (it only takes a simple mouth swab), I set out to get as many new registrants as I could. We’ve added over 300 donors to the registry this year through drives at LSU, St. George Fire Department, and the NATA and Sports Physical Therapy meeting. And we’ve even had 3 matches from our drives! How cool is that? I’m thankful for all those who registered, but more importantly to those who helped organize these drives around the country. If you are between 18 and 44, please join the registry through www.bethematch.com. If you can’t register, consider donating to Be the Match.
5. I learned that faith, friends, and family are the key to getting through rough times. I believe in the power of prayer. I can’t tell you how many people were praying for me this past year. I continue to hear stories about how people I barely know encouraged their entire congregations to pray for me and continue to pray for me today. I always tell them, “Thank you…your prayers obviously worked!” I have added several people to my daily prayer list as well, and I pray every morning before getting out of bed. I can attest to the fact that prayer works. I’m thankful for the many people who prayed for me and continue to pray for me every day. Remember those in need in your thoughts and prayers, and pray every day.
One of my physical therapy friends had her children praying for me every day. When she told them that I was doing better, this is what they said: “I’m glad Mr. Phil’s doing better; the angels must not need any TheraBand in heaven yet.”
6. I learned that writing this blog is as much for you, the reader, as it is for me. I’m happy to hear of the positive results from my blog, BoneMarinara.com. We had 24,000 views in 2014. So many of you have commented on the site, via email, and to me personally how inspirational the blog is…with a little humor. That’s what I set out to do and that’s what keeps me going. It’s hard to write a blog with content worth reading. As you can see, I’ve slowed to about one post a month. It takes me about a week to pull a good blog together like this one, and it never ends up the way I thought when I started. It’s always better. (Kinda like me J) I’m thankful for those who read and share my blog to help support and educate others.
Oh, and how am I doing, you may ask. Well, I’m coming up on 8 weeks between transfusions, which is the longest I’ve gone, and that’s a good sign. My platelet count is as high as it’s been (30) and my neutrophil count is low normal (1500). My white and red cells are still quite low, but I believe my daily walking helps (thanks to my walking buddies!) Exercise is Medicine!
So, what are you thankful for? What are you prepared to do in 2015 to #MakeGood?
As for me, I’m looking forward to bone marrow biopsy #6 in February at the NIH.
Till next time