Balance. Balance between good and bad. 3 weeks ago, we talked about how positive things were moving. God has a way of balancing things out. The ability to react to both good and bad news on a continuum of ups and downs. Well, last week was one of those “bad news” times. Like all of you, I’ve been praying that my blood counts increase weekly as a sign that my marrow is recovering. On June 10, my ANC was 1200, but after dropping to 900 the following week, my counts remained the same; 900 again last week. What a different feeling than when I was asking God for 800 and got 1200. I was happy that God had given me numbers beyond what I asked, but I remained “cautiously optimistic”. Then I hit the bottom of the “good news-bad news” cycle this week.
Then I thought about Garth Brooks. I love “Unanswered Prayers” and remembered that there are some times when God doesn’t answer our prayers for reasons we don’t know or understand.
“Just because He may not answer doesn’t mean He don’t care.”
You may briefly think that prayer isn’t useful; but it only means that we need to pray more for understanding. And these ‘bad’ things that happen are for the bigger picture God has planned for us. I’ve found prayer helps, and I’ve been praying a lot this week, hoping for 1000 tomorrow at my blood test.
To add to my woes, my hematologist, Dr. Cataldo, said last week that I’m not progressing as much as I should at this point. We need to start thinking about a bone marrow transplant. Needless to say, I was a bit disappointed and sad, particularly after seeing the positive signs of increased ANC and more time between transfusions. No “false hope” given here.
It’s hard to remain positive when you get negative news. Thankfully, my rock, Angela, was there for support. I knew it would only take me a little while to get past the bad news, because I knew God has a reason. Maybe it’s to test my faith.
Romans 5:3-4. We can rejoice, too when we run into problems and trials, for we know that they are good for us-they help us learn to endure. And endurance develops strength of character in us and helps us trust God
more each time we use it until finally our faith is strong and steady.
There’s still a chance I can rebound based on the 6 month timeline, but not very likely. Unfortunately, I don’t have a full match yet. It’s kinda like waiting for an organ transplant, where I have to wait until a donor becomes available, and undergo maintenance transfusions until then while avoiding infections. This too is in God’s hands, since there’s nothing I can do to increase my odds of finding a match. I just pray that there’s a donor with the right DNA that’s in the registry.
There can be a full match for me somewhere out there that doesn’t know it and hasn’t registered yet, so I’m doing everything I can to get people in the registry. I’ve found that there is some apprehension and perhaps some apathy towards being a potential bone marrow donor. Last week, I helped pull together a donor drive at the National Athletic Trainers Meeting with about 8000 attendees. How many swabs did we get? 108. Special thanks to my friends Mary Wilkinson and Michael Dell, as well as the other volunteers and donors who helped out.
The optimist says “That’s 108 more than we had before to potentially save someone’s life.’ The realist in me says, “Why did so many people pass the table to donate blood and refused to give a mouth swab?” They obviously aren’t afraid of needles, which is what being a bone marrow donor is really about. That’s why education about being a donor is key.
That’s why I think God gave me this disease: to increase knowledge and awareness about bone marrow disorders, and to find matches and blood donors if not for me, for someone else.
Today, I found this ‘behind the scenes’ video from Be The Match about what happens after you get a mouth swab.
Please continue to donate blood and platelets for me and those needing blood products, and of course, encourage everyone you know to register with Be The Match!
I’m feeling pretty good, still walking 3 miles most days, but lacking any energy for exertion like stairs or even inclines! Good thing we live in a flat area down here. The biggest limitation for me is the side effect of the cyclosporine, which causes burning & swelling in my feet and limits my standing / walking, as well as high blood pressure and decreased kidney function.
I’m back to working full time from home, and really enjoying my job. I feel like I’m doing more now than I did before I was sick (but not traveling as much). I’m happy to report that my first business trip went very well. It was great to see a lot of my friends.
And remember, pray for 1000 tomorrow!