Category Archives: Doctors Visits

Looking up…with cautious optimism

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Those who have known me for a while know I used to be pessimistic at times. My philosophy behind that was that I would never be disappointed with a bad outcome if I’m expecting it. In fact, I used to call it, “The Power of Negative Thinking” (See the opposite of Norman Vincent Peale). I felt that the disappointment I experienced when I didn’t get what I expected was worse than if I had anticipated a negative outcome. My aplastic anemia has helped me to change that way of thinking.

A month ago, I saw a nice spike in my blood counts; my ANC went from 800 to 1200 in one week. I thought that was my turning point. I was happy with the progress and feeling positive that I might actually survive this.

My hope was quickly squashed when it went back down to 900 the following week and stayed there for 3 weeks.

Then my doctor started talking about ‘non-response’ and a bone marrow transplant. That was a rough time for me. But I came through it by thinking about how I can make something positive out of this situation.

You don’t have to be full of positive thoughts to make a positive impact on someone else.

I now realize that negative thinking is very depressing and not very rewarding. Negative thoughts have to be quickly pushed from your mind or they will consume you. They feed on your fragile psyche and require little energy on your part.

negative-positive

On the other hand, positive thinking is hard. It takes some effort, particularly in the face of negative news. It may come easily to some people, and harder to find in others, especially those that are stuck in worry, fear, and depression.

I know the odds are against me. I know I’m not progressing as fast as the doctors expect. I know I am still at risk for serious medical problems. But…

I know I’m doing everything I can by taking my medicine, exercising and being careful not to get sick or start bleeding. I know I have a tremendous support network of family and friends. And I know some of my counts are creeping upward, and some are staying the same.

You need to balance the positive thoughts with realistic thoughts. Realistic thoughts sometimes have a ‘negative’ tone, but they need to be considered. I’ve heard stories of how some patients take 8 to 12 months to respond. So I remain “cautiously optimistic” now with good news, sometimes downplaying positive things as well.

Remember when you were a kid, and you asked Santa Claus for that special present…but you didn’t get it on Christmas morning? How disappointed you felt. Yet how quickly you got over it when you realized how many other toys you did get?

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I pray every day that God increases my counts. Sometimes He does, sometimes he doesn’t. When He doesn’t, I quickly try to remember there’s a reason…and I think about the other blessings I have. I’m lucky to be alive after 2 months in the hospital with sepsis. I’m blessed with my family and friends, a great job, and of course, the Brewshack!

This week’s blood counts were encouraging. My ANC is back up to 1200 (out of 1500), so the white cells are slowly increasing. The red blood cells and hemoglobin remain the same; I still need bi-weekly transfusions since my red blood cells aren’t being produced by my marrow. But the good news this week is that my platelets have increased for the first time, reaching 23 (out of 150). This is the first week I don’t need a platelet transfusion…which is good because I had an allergic reaction during last weeks’ platelet transfusion!

This illness can really mess with your mind. I have to get blood drawn every week (ouch!), and I have to hope and pray that the numbers are increasing each time. But they don’t. They go up and down. “What does that mean?” is all I can think about. That can be nerve-racking….not just for me but for my family and friends who want to know how I’m doing. But there’s nothing I can do about the numbers.

Romans 8:28. And we know that all that happens to us is working for our good if we love God and are fitting into his plans.

I remember when I was trying to lose weight, running 5K each day and I was so happy to see the change in my body weight over time. I looked forward to seeing those numbers each time I stepped on the scale because I knew those numbers represented how hard I had worked.

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But now, I can’t anything to change my numbers. My blood count numbers don’t care about what I do. While exercise and eating right will help my overall health, it wont change my numbers.

It’s tough to go through life relying on numbers or other measures in your life, especially numbers and quantities you can’t control. So with the inspiration of my brother-in-law Kevin, I came up with this quote:

“Count on faith, not on numbers.”

If you are relying on numbers like cash, belongings, or blood counts for happiness, you will inevitably be disappointed as these things. Keeping your faith strong should be the only thing that really counts.

Hebrews 11:1. Faith is the confident assurance that something we want is going to happen. It is the certainty that what we hope for is waiting for us, even though we cannot see it up ahead.

That’s why I look upward to ask God for help in healing me, because it’s all in His hands.

jesus-prayed-in-garden 

I’ve lost my MOJO! But I’ll find it.

900 ANC again this week.

Not the 1000 we had hoped and prayed for. 1000 is more of a milestone goal rather than a necessity. Mostly, it represents moving in a positive direction, which is something we haven’t seen in the last few weeks.

Psalm 27:14. Wait patiently for the Lord. Be brave and courageous.

The optimist says, “At least the numbers didn’t decrease.”

The cautious optimist says, “Yeah, that’s true, but….”

It’s been a little rough for the “status quo” these past few weeks….it seems like I’ve lost my mojo, baby!

With this lack of progress, I know I need to focus on taking care of myself (physically and mentally), but I still feel like there’s more I need to do for others in need. In fact, I think I feel this way because otherwise I’d start feeling sorry for myself, which I don’t want to happen.

What good does it do to worry about things about myself that are out of my control? (say this aloud to yourself if you need to; repeat as necessary)

Turn the worry into motivation to help others in need. Stop all the negative thoughts and reach out to someone who needs help. It will help you get your mind off of your worries.

Peter 4:11 Are you called to help others? Do it with all the strength and energy that God supplies, so that God will be glorified through Jesus Christ-to him be the glory and power forever and ever.

So here’s what we are going to do.

My wife Angela will be hosting another blood drive. The drive is scheduled for Monday, July 28th 1:00-6:00 in the main conference room at the Woman’s Center for Wellness. 9637 Jefferson Highway (corner of Bluebonnet). For those of you who regularly donate or haven’t donated since our last drive, here’s your chance!

And stay tuned for a Be The Match “RunWalk”….among other things we are hoping to do to increase awareness!

I”m not gonna sit back and let this get me down.

God’s got dis!

hat #MOJO!

Is this another test of faith?

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. good-news-bad-news1 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.

Paper Fortune TellerIt’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.

shaq-be-the-match

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!