I was doing a research presentation last week and discussing the outcomes or ‘effects’ of research studies. The ‘effect’ is essentially what happens to a study group based on some type of treatment. Sometimes, a treatment can do more harm than good. That’s obviously important to know.
I discussed the difference between positive effects (good outcomes) and negative effects (bad outcomes). I used a ‘speedometer’ to represent the difference between beneficial effects (positive), harmful effects (negative) and trivial effects (very little either way).
My friend and fellow researcher, Dr. David Behm commented, “You know, you can have a ‘negative’ effect that’s actually beneficial. For example, if you see a variable decrease after treatment, that might be a good thing.”
He was right! Just because something is negative doesn’t mean it’s harmful. Negative experiences are often still beneficial, even though we don’t always see it that way!
We’ve talked about how my negative experiences have been beneficial and given me purpose. But there are so many others out there who are in worse situations that me; and handle it just as well if not better.
Case in point. My neighbor, 2 doors down, Roxanne Green. Her husband Johnny is a pastor at Healing Place Church here in Baton Rouge. They have 4 little boys.
Roxanne was diagnosed with ALS (Lou Gehrig’s Disease) over a year ago. Bottom line: ALS sucks. No cure. Progressively debilitates your entire body, but your brain still works, and you can still live a while, but from a wheelchair.
Steven Hawkins has it. Steven Gleason, the former Saints football player has it. And it gets a lot more attention than Aplastic Anemia. Have you seen the Ice Bucket Challenge? My daughter Hannah did it on video the other nite. (Looking for a similar type of viral video challenge for bone marrow donation, by the way)
I started to think this street we live on is cursed with my condition, Roxanne’s, and several other medical issues on our tiny cul de sac. But then I realized, our street is actually blessed with wonderful people who face adversity and wonderful neighbors who are always there to help.
I wanted to share Roxanne’s and Johnny’s story with you. Watch this very moving video from them (Their part starts at about :21 minutes). So many great quotes to think about. Roxanne said, don’t feel sorry for me; “Be moved with compassion.”
Johnny said, “Let go of despair and hold onto hope.” Then he went on:
“God’s blessing in our life has outweighed the pain. Find the blessings in your life because great fulfillment is a weapon against despair and it leads us to hope.”
Powerful stuff. An amazing family, just 2 doors down. Green Willow Drive is definitely blessed.
It’s been an amazing 3 weeks since my last post. Sorry for the delay, but as you’ll see, there’s been a LOT going on!
The counts are increasing
Well, not really my blood counts…but, I wanted to say THANK YOU to all those who came out and donated over 60 units of blood and platelets at the Woman’s Center for Wellness drive, and a special thanks to my wonderful wife, Angela who coordinated everything with Our Lady of the Lake. That brings our donor count to over 300 units donated since January. MOJO!
Bone Marrow Biopsy #5
Last blog, I talked about how my counts were down and that I would be going to NIH for the ‘next step.’ That happened this past Tuesday, and of course, I had my fifth bone marrow biopsy. (Read about my previous biopsy experiences here!) This one was a little uncomfortable because I had to do it without sedation. But I gritted my teeth and it was done in about 10 minutes. My butt still hurts a little though…maybe a little Boudreaux’s? The doctors at NIH say there is some positive sign of a slow response (remember that I’m 2 months behind schedule!), so we will wait 1 to 2 months to see my progress and determine next steps for treatment. MOJO!
The next day, our Be the Match representative, Madonna Phillips, asked me to be at the mayor’s press conference on April 12. I said, “I’m happy to be a poster child, but I can’t be there then. I’m scheduled to go to NIH!” But I quickly called my friend Matt Williams, the morning anchor of the top rated morning show on WAFB, and asked if he would like to do a story on me to time with the mayor’s announcement. Without hesitation, he had everything set up and produced an amazing 4-minute video of my story and family here.MOJO! We even had a 6AM watch party at the Brewshack that morning! Wait, who’s that guy in the yellow shirt? (This story keeps getting better!)
MarrowQuest is in town!
That’s Steve Matchett who is doing a 2500 mile bike ride down the Mississippi River to promote bone marrow donor awareness (by the way, he’s 72 years old!) He blogs about his journey at www.marrowquest.org.
No, it’s not GalaxyQuest. But that was a pretty cool movie!
I just found out about Steve a few weeks ago through Jeff Haertling, who just happened to read my blog and sent me an email about Steve. I reached out to Steve to see what I could do to help and then put my network to work! MOJO!
He’s riding for the Hendrick Marrow Program. Yes, the famous race car owner Rick Hendrick, who had leukemia but didn’t need a transplant; yet he created a program with Be the Match to raise money and awareness for bone marrow donation.
Still doesn’t ring a bell? Ever hear of Kasey Kahne? Jeff Gordon? Jimmie Johnson? Dale Earnhardt Jr? They all drive for Mr. Hendrick!
My good friends and neighbors, Cheri & Blaine Efferson offered to pick up Steve in Mississippi, and house and feed him for 3 days so he could make the mayor’s press conference (with thanks to Darrell Ourso!) I was honored to sign his bike, which will be auctioned off after his quest ends. In true, south Louisiana tradition, we had everyone at the Brewshack for a jambalaya dinner and Bone Marinara Bracelet ceremony!! MOJO!
One of the highlights of these past few weeks was my annual research meeting (TRAC) for my company. I had been hoping to attend this event that I started 16 years ago, and made it a goal to attend 7 months ago. We had our meeting in Park City, Utah, and I had to get an extra bag of red blood to survive the elevation. But I made it and had a great time with my awesome wife and friends. MOJO!
One of the best parts of the meeting was when my boss, Ethan Pochman, gave me and my wife shirts that say, “Everyday I fight.” The same shirt that Stuart Scott wore in my last blog post. (Stuart Scott is a sports caster with ESPN battling cancer).
I tweeted about my story to Stuart Scott (who has 500K followers) and he actually replied. MOJO!
Bone marrow transplant is still my only option for a cure. But without a full match, the risk of complication is too great, so we are waiting and continue to transfuse regularly. Remember the book, A Purpose Driven Life? I read it a few years ago and it helped me to find a purpose for our life and God’s mission. I think I’ve found the purpose of my life and the reason for all of this.
In the past 2 weeks, things have happened so fast and so simultaneously that God has to be behind this. He wants me to promote bone marrow donor awareness. MOJO!
So you can see, there’s lots of MOJO going on here all at once… hundreds of blood donors, hope in my treatment, the mayor’s bone marrow challenge, my story on the news, Steve and MarrowQuest, facilitating my network, southern hospitality, achieving goals, leveraging social media, and finding a purpose for all this.
As I told someone today, my entire experience isn’t necessarily positive or negative, it’s enlightening. And hopefully helping many more people than we’ll ever know. Life is GREAT!
First of all, apologies for not updating everyone sooner. As I’ve gotten back into the swing of things, I’ve gotten as busy as I was before (sans the travel). I’m finding it harder to make time for everything I need to do, particularly at this time of year, as school ends, driving lessons begin, and recitals engulf the rest of our time. By the way, have you seen my beautiful daughters in their dance recital costumes? It’s hard to believe the twins are 16 and almost driving!
I figure it’s good news that I’m busy…back to doing the things I used to. I’m working full time from home, which is easy because I sit behind a computer or phone most of the day. I shuttle kids around and do most of the cooking, which I enjoy. Sometimes it’s hard to just sit there and watch everyone do everything else.
A few weeks ago, I was feeling pretty rotten. We found out that I was becoming toxic from my chemotherapy! I was at 3 times the normal levels in my blood, making me feel sick just about every day. We’ve cut back on the medication, and I’m doing much better, although I know I”ll have to try to get back to the therapeutic level really soon.
Overall, I feel pretty good an quite normal most of the time, although I know when I’ve overdone it!The only things I don’t do are strenuous activities, or things involving potential infections like dirt, animals, etc. But I know I have to save my energy and remain infection-free. Luckily, my neutrophil count was 510 last week, so I’m climbing back up…for now. I’m constantly checking my temperature to be sure I don’t have a fever, which could be a medical emergency for me.
Last week, Angela and I went to Bethesda to the NIH for my 3 month follow-up (3 months from when I started treatment in February). While the good news is that I’m feeling good, I haven’t responded as we had hoped. I still require weekly transfusions and my counts aren’t going up. They are going to give me 3 more months of chemotherapy and see if I respond then. Some people have taken up to 6 months, particularly if they had an infection (like me!) Remember that I stayed in the hospital until about a month ago, so essentially I’m a month behind, and remain optimistic that I will respond.
At my follow-up I had my 4th (yes FOURTH) bone marrow biopsy. This time, my nurse practitioner, Monica, performed the procedure while I was sedated. It went very well, and I didn’t have any pain! Just a bit of pressure, and remained awake the entire time. She did a fabulous job.
At the 6 month follow up in August, I’ll have another biopsy and they will decide the next step. If I stay the same as I am now, they will try another round of immunosupression with a different drug. However, if my counts decrease, my transfusion dependency increases, or I get multiple infections, a bone marrow transplant may be my only hope.
At this point, I don’t have a full match for a bone marrow transplant. As you know, it’s very difficult to find a non-sibling match, which is why it’s so important to get tested! (www.BeTheMatch.com) There might be an experimental stem cell transplant if needed, but we are praying that I won’t need a transplant…and I ask that you pray for the same.
I haven’t had a drink since February 1, and haven’t really missed it. Sometimes, I think about how good my home brew tasted, but all-in-all, I haven’t missed it as much as I thought I would. Luckily, I have some very thoughtful and awesome friends who have sent me some great alternatives like root beer, or t-shirts from breweries, or books on home brewing! And one of the most thoughtful was from my friends Julie and Mike:
Yes, Jelly Belly Draft Beer Jelly beans and commemorative beer glasses! What an awesome gift (although my beer definitely tastes better!).
But one of the best gifts I got was from Barb. She sent me a copy of “Jesus Calling,” which is a daily devotional. I’ve been reading it every day and it really helps me focus on God as I get through this.
I continue to thank God each day that I’m “still on this side of the grass.” Angela reminds me of how close I was to dying in the hospital. All I could think about was how I prayed in the hospital that I’d make it back to see my kids. Hang out at the Brewshack with my family and friends. Get back to work. And He’s done it.
Matthew 7:7-8 Ask and you will be given what you ask for. Seek and you will find. Knock and the door will be opened. For everyone who asks receives. And anyone who seeks, finds. If only you will knock, the door will open.
A recipe for education and inspiration…with a touch of humor