Don’t give up. Don’t ever give up.

dont give up

My friend Dale shared this video from the Jimmy V awards last week, thinking of me. ESPN anchor Stuart Scott got the Jimmy V Award for his battle with cancer. He was in the hospital just the week before he got the award with liver and kidney failure, as well as surgery….the same as me back in March.

Please take 15 minutes to watch this.

This video epitomizes me. I don’t want to leave my kids without a dad. I love what I do and I want to keep working hard. It’s what keeps me going. “That’s how I win.”

I don’t know how he got through that speech without crying, because I didn’t. Stuart Scott is my new idol.

Funny how little things like this hit you in a very timely fashion. I needed that. Thanks, Dale.

Even though I don’t have cancer, aplastic anemia is up there with rare and deadly diseases. Stuart Scott had a fantastic quote about cancer that applies to anyone with a life-threatening disease:

“When you die, that does not mean that you lose to cancer. You beat cancer by how you live, why you live and the manner in which you live. So Live. Fight like hell.” Stuart Scott.

As I feared, my numbers plummeted yesterday. The doctors at NIH stopped my cyclosporine chemo last week since it was doing a number on my kidneys and causing ankle swelling. While my swelling is gone, now my numbers have dropped to levels I had 2 months ago. My ANC dropped nearly half, to 700, as well as my platelets that had been rising on their own.

All the progress…
All the hope…
All the hope…
All the optimism…
All the prayers…

This is not good. It probably means that my marrow really hasn’t started making the cells on its own, and it probably won’t. The chemo was just suppressing the t-cells that were attacking my marrow. Without the cyclosporine, something continues to stop my marrow from producing cells. The cyclosporine was not meant to be a long-term solution, and I was due to stop it next month.

We don’t really know what’s next, and won’t know until my visit back to NIH on August 12. I don’t think there’s much else they can do without a full match bone marrow donor. All we can do is pray for a match and pray that I avoid infections.

roller-coaster-life

I’m on an emotional roller coaster right now and trying to remain strong. It felt as though they had given up on me. Anxiety, fear, and depression were lurking around the corner.

But I’ll tell you this…I’m not quitting.

I’m just coming from the bottom of the coaster and making my way back up.

slow-motion-rollercoaster

It’s How you live, why you live, and the manner in which you live.

I have a huge base of support from family and friends; even people I don’t know are praying for me.

I wanted to share something from someone else that inspired me. I’m so happy to hear almost every day that my story and my blog have been so inspirational for others.  That’s what I set out to do after my diagnosis…so I can’t quit.


 “Don’t give up. Don’t ever give up.” Jimmy Valvano

Looking up…with cautious optimism

keep-looking-up

 

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?

disappointed-baby1

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.

scale

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!