October 18, 2011 -- Do as I Say, Not as I Do.

I have never had a problem giving out advice and it never seems to matter if it has been requested or not. On the flip side, I am one of the worst people when it comes to taking advice from others. This last Friday might be the turning point in what I do about advice. I’ll probably still be free with advice, but maybe it be a little more open to advice I receive.

This last Friday was Senior Night for Jason’s football team. In my mind it should have been called “Parents’ Night” since we were called out on to the field and got to escort our respective senior out on the field. Even with as much promoting as I could do, it never seemed to catch any traction so they kept it at “Senior Night.”

You have to understand my insistence on Parents’ Night, however. While I was in high school, the closest I ever got to a varsity field was when I bought a ticket and showed up in the stands. I was wonderfully mediocre at just about every sport I tried, so getting on to the field was a nice experience for me.

Jason’s senior season has not gone according to plan as he started the first game of the season but has seen his playing time go down as the season progressed. Over the last two years, 33 scholarships of varying levels have been given to seniors graduating from Hamilton, so we all had our hearts set on Jason getting some looks from somebody, somewhere. We weren’t delusional about BCS or even Division I, we were just hoping that he would get some money and have an opportunity to continue to play.

I must say, however, that he has taken it well, far better than me. He has remained enthusiastic even when he was only playing on special teams, congratulating teammates after good plays and having a good time, even when he felt he wasn’t able to contribute as much as he would like, he kept his head up and kept giving it 100%. His perseverance has paid off and he's back in the starting lineup this week against Basha.

During these two months I’ve been talking to him quite frequently trying my best to keep him in the game, so to speak, because in football you never know when your number might be called. I don’t know if he has been listening but I can tell that he hasn’t given up hope.

All this brings me to my situation and my own inability to listen to my own advice. Odd, it was during the game that I got my latest results on my blood work. If you remember, I was showing some gradual improvement on the level of cancer in my blood stream during the first two months on Revlimid. I was concerned that it might be losing steam but the worst I expected was no improvement. To my huge disappointment, the results were even worse; the cancer had gone up to basically where it was at the beginning of the three months. Since this is a G-rated blog, I will not repeat the words that I uttered when I read the email.

I have really done my best to stay positive no matter what the results have been over the last 33 months, but for some reason this hit me harder than anything since I found out that I was sick. I was hoping to get three years out of this drug and it looked like I was going to get three months. When you are doing everything you can to stretch out your life, 33 months is an eternity. There are other drugs I can take, but losing probably the best one so quickly was not easy to swallow.

I tried to not let it affect me too much, but it really came to a boil when I went into a 30 second road rage on Sunday when a woman forgot how to drive in a parking lot. I realized at that time that it was time to reel it in. It seems that I could advise my son to stay at an even keel and stay positive, but I couldn’t do it myself.

I shared my latest findings on Monday with a friend from high school that I reconnected with at my 40th reunion a couple weeks ago, Herb Schwendeman (more on the reunion in my next blog.) Herb had some kind and thought provoking words that helped push me even further down the road to a more sensible approach.

“The Rosary starts with three prayers for an increase in faith, hope and charity.  I have found myself trying to appreciate the difference between faith and hope.  An intellectual question perhaps, but certainly faith is the base that allows strong belief with little understanding.  There are those who would say that faith is irrational.  But then what is hope, John?  Do we all have hope on some level?  Hope must surely rest on a strong faith.  Is hope the expression of desperation? To believe in the face of seemingly insurmountable odds that God will grant us what we seek; is this hope? Is hope faith that things will be better?   I often visualize hope as holding on to God's sleeve, in silent hope that He will in His mercy grant me peace.”

I have felt all along that the only way to beat this disease is to have faith in myself, my doctors and God. I think it is only through that combination that I will be able to do what I have envisioned with the rest of my life.

Julia and I met with Dr. Mikhael on Monday afternoon and he suggested an approach that I had given some thought but quickly brushed away. Because of my damaged kidneys, I was only taking 10 milligrams of the Revlimid in comparison to dosages as high at 20 mg. for people with healthy kidneys. After meeting with several other doctors at the Mayo, Dr. Mikhael suggest that we take the dosage to 15 mgs. due to the fact that my kidneys were holding up well with the 10 mgs. So for the next 6 weeks we will try that approach and see what happens.

I suppose I just needed a slap in the face or two to get back to having faith that between God, Dr. Mikhael and myself that we could come up with a solution that might work. I guess we will know in 6 weeks.