Tuesday, October 18, 2011

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.

Wednesday, October 12, 2011

October 12, 2011 -- Light the Night III

Since I began this fight with Multiple Myeloma the “Light the Night Walk” has become an important milestone for me every year. It allows me to put an additional notch on the wall that I have beaten cancer for another year. The fact that the first year was such a struggle for me and each year has gotten easier helps give me another reminder of how good I actually have it. Please take a couple of minutes to read the note that I have sent out to a few folks that don’t read this regularly. If you can join us or help in the cause, it would be greatly appreciated.


It is once again time for the Leukemia and Lymphoma Society's “Light the Night Walk.” This will be my third year to participate which, in a way, is a bit of a minor miracle. When diagnosed with Multiple Myeloma 32 months ago, I had no real reason to believe that I would still be here today. Those of us that find the disease in Stage III (there is no Stage IV) typically live 29 months. I’m one of the luckier ones that has outlived the median mortality rate and continue to feel good about my future.

This last year has had its ups and downs as one of my best friends also found out that he has Multiple Myeloma. In addition, one of the people that reached out to me shortly after I was diagnosed passed away after just over two yours of fighting the disease. Julia’s grandfather passed away this spring from Leukemia after a long fight with prostate cancer. He was 96, but as vital as the day was long. He was not ready to die. To top off the year, my stem cell transplant ran out of gas and I began a regimen of chemotherapy three months ago that will continue for the rest of my life.

Despite that, I remain positive because I know that I have much to live for and there are great advances in research coming. Another good friend that is in his mid-twenties and fighting MM was recently married and is enjoying a honeymoon in Italy. One cannot stop living because they are fighting a terminal disease. You have to live life to the fullest and enjoy every day as if it were the last.

The walk this year will be held at the Tempe Arts Park on the evening of November 12, 2011 as it has for the last two years and we can only hope for greater success. If you can, please come and support the fight against all blood cancers through donations and finding others to join in the walk as we seek more answers that will eventually find cures. If you cannot come, please donate knowing that every little bit that comes in goes to help sufferers of these dreaded diseases. It may be something as simple as helping with co-pays or education around clinicals that are happening or counseling both the patient and their family. In the end, a good deal of your donation will help in the fight for cures.

The fight for a cure is so important because when you have an incurable disease, you cannot help but wonder every day, “how much longer can I last?” You know that the disease is still in you and doing its best to end your life. It is something that you learn to accept, but it is still there. I look forward to the day that I can start thinking about holding a grandchild and not just wonder if I will be here in a in a year. We all need your help.

Remember that this is a night to remember those we have lost not only to blood cancers but cancers of all kinds. It is a celebration of their lives despite being taken too soon. We all have loved ones that have died or are fighting cancer. Please help put a stop to it once and for all.

You were all so generous last year that I can only hope that we can reach and beat a more aggressive goal. Please join Julia, Justin, Jason and me in fighting these diseases. Click on the site below to join in the cause.

http://pages.lightthenight.org/dm/Phoenix11/TeamOutlaws


Thank you for your continuing help,


John Churan

Thursday, October 6, 2011

October 5, 2011 - The Loss of a Genius

Today is the 21st anniversary of my father’s death and I took a bit of time to reflect on that and the interesting life that he led. I have always said that my life was boring but a very good one. My father led a life that although not adventuresome, it was certainly one that gave him a complete lifetime of experiences at a very young age. I have often wondered if I had shorted myself out of those kinds of adventures for the safety net of constant employment.

Just before I was to head home from work, Julia texted me that Steve Jobs, the mastermind behind Apple, had died. This was not completely unexpected as he had been fighting cancer for years, but still one that set me back. Understand that I am not an Applephile. I have owned the same iPod for the last five years and we just purchased an iMac that I still can’t figure out. I have watched Apple from afar but never fell in love.

Steve Jobs is a different matter, however. If there is such a thing as a man crush, I have had that for years. Jobs was an everyday man that went from being abandoned by his parents to one of the richest men in the world. He dropped out of college because he felt guilty that his adoptive high school-educated parents were spending money that they didn’t have to send him to a school that was one of the most expensive in the country.

He felt that he could do more on his own as he chased his dreams. And did he ever chase his dreams. From the garage of his parent’s humble home, he and Steve Wozniak created Apple. He went on to lead Apple to great heights only to be fired. Imagine being fired by the company you created. Yet he bounced back to lead the company to even greater heights, at one point, being the most valuable company in the world.

He was a genius at a time when we scoff at the very term. It seems that it is easier to believe that someone from the past is far greater than someone of the present. It is the reason that Babe Ruth will always be called the greatest baseball player ever no matter who comes after him. We find it hard to crown someone as being exceptional in our own lifetimes no matter what they achieve.

More than anything, I believe that Jobs was special because he didn’t fall in love with the thought that he was special. He was knocked down so many times in his life that he knew the only way to survive and make a difference was to work harder and never give up. When he found that he had cancer in 2004, he became a mere mortal and it drove him even harder. Even though he initially beat cancer, it made him look at life as being even more precious. When he spoke at the Stanford graduation ceremonies in 2005 he spoke from the heart.

“When I was 17, I read a quote that went something like: "If you live each day as if it was your last, someday you'll most certainly be right." It made an impression on me, and since then, for the past 33 years, I have looked in the mirror every morning and asked myself: "If today were the last day of my life, would I want to do what I am about to do today?" And whenever the answer has been "No" for too many days in a row, I know I need to change something.

“Remembering that I'll be dead soon is the most important tool I've ever encountered to help me make the big choices in life. Because almost everything — all external expectations, all pride, all fear of embarrassment or failure - these things just fall away in the face of death, leaving only what is truly important. Remembering that you are going to die is the best way I know to avoid the trap of thinking you have something to lose. You are already naked. There is no reason not to follow your heart….

“No one wants to die. Even people who want to go to heaven don't want to die to get there. And yet death is the destination we all share. No one has ever escaped it. And that is as it should be, because Death is very likely the single best invention of Life. It is Life's change agent. It clears out the old to make way for the new. Right now the new is you, but someday not too long from now, you will gradually become the old and be cleared away. Sorry to be so dramatic, but it is quite true.

“Your time is limited, so don't waste it living someone else's life. Don't be trapped by dogma — which is living with the results of other people's thinking. Don't let the noise of others' opinions drown out your own inner voice. And most important, have the courage to follow your heart and intuition. They somehow already know what you truly want to become. Everything else is secondary.”

Steve Jobs was no saint as some of his early indiscretions would indicate, but the man truly was a genius. He brought about change. In many ways, he changed the world. He didn’t bring world peace or find a cure for cancer but he did make a difference even to the end. Listen to his words, they speak volumes. Don’t ever let failure stop you; don’t ever let potential embarrassment hinder your efforts. Follow your heart and make a difference. Make use of what precious time we have.