June Update

My daughter, Anna, who had gone in to work at 4:15a.m. to get a project started, drove me to the Scottsdale Mayo Clinic. Past saguaro cacti almost as tall as palm trees, we drove through a neighborhood of high end homes, all the color of the landscape. The morning temperature was already pushing 100 degrees as we stepped out of the car into the Mayo parking lot to hear the chimes play, "O What a Wonderful Feeling, O What a Beautiful Day." Evidently the Mayo wants you to think happy thoughts.

We entered the building to be swept into a current of kindness and efficiency. Everyone was helpful. Everyone knew what they were doing. I had a very thorough exam from a highly respected doctor who took more time with me than I expected. He drew some initial conclusions but then set up my schedule for the next day.

Day two was a flurry of filling out forms, phlebotomy (19 vials of blood and one cup of urine…I'm glad those numbers weren't reversed!), and fascinating conversations with friendly doctors (5 appointments in 8 hours.) The day concluded with another visit with my initial doctor who already had the results from my other appointments before him.

Here are a few things I learned:
1. My swallow is functioning at about 10% capacity. This was a little disappointing, but it sure was fun--after all the unsuccessful tests of the past 18 months--to watch the barium go all the way down my esophagus. And, I can tell that even in the days since then, my swallow continues to gradually improve.

2. I gained a better understanding about the nerve damage in my left leg and a reassured hope that it will improve.

3. I gained some helpful, although hopefully unnecessary, information about feeding tubes. I continue to pray that this will be the last tube I ever have.

4. The most significant sentence I heard was, 'Mr. Stoombo, I can say with certainty, you have Dermatomyositis.' This is the diagnosis I've been treated for the last year. (It doesn't fully explain what about killed me at first, but it does explain much of what is going on in my body now.) The doctor verified that some of the treatment I am receiving is appropriate and significant while immediately taking me off one medication…one I've always questioned. So, I've happily quit taking it. There is a chance that by getting off of this medication that my anemia will improve--my blood level and counts have remained low all year. This may have been a contributing factor.

5. One doctor (whose cool name sounds like a sports car driven by a Saudi sheik) wants me to come back and run numerous tests to see if I have an 'overlapping' condition as well...that I may have something else going on besides the Dermatomyositis. I'll talk to my local doctor about this.

Meanwhile, Anna and Jeff were fabulous hosts. We had a great time together. It was so nice to sit at restaurants with them and be able to join in--only one hour for the peanut butter DQ shake!

Those are all the facts, but some of you want to know how I'm really doing with all this. Here's the real answer: I was disappointed…to say it mildly. I didn't hear what I wanted to hear. I wanted to hear, "Mr. Stumbo, they misdiagnosed your disease and here's the remedy that will have you back to normal soon." Instead, the doctor looked me in the eye and said that I would never run the long distances again that I once did. A second Mayo doctor said, "You have a condition that you will have to learn to live with." It was sobering.

I've had a week to process it and here's where I'm at today.
1) I believe that it is good to be told the truth and accept it. This is my condition. I need to face it. I respect those who face the truth about themselves and want to be one of those people.

2) I believe that this is all the more reason to continue to pray for healing. If God continues to heal me completely, the statements from these doctors will only add to the glory God receives for the healing.

3) I need to accept that without divine intervention, medicine will only be able to do so much for me. According to the National Association of Neurological Disorders, "There is no cure for Dermatomyositis." That's pretty straightforward.

A few months ago I wrote that I was seeking to: "Accept today. Battle for a better tomorrow." In my post-Mayo reflection, I realize that this is more appropriate than ever.

Much of this "battle" is in prayer. So many of you are battling with me and I thank you again.

He has healed me, He is healing me, He will heal me.

May He grant you the grace to accept whatever you face today, while determining to do what you can so that tomorrow is better.

Battling with you,
John