Your positive thinking didn't work for me, Dr. Dyer.

All of my CLL friends will understand the subject line. Other readers may not. Recently, Dr. Wayne Dyer was diagnosed with CLL. His knowledge of the disease is no doubt very limited and he has probably been given the "good cancer" spiel about how he could live 25 years without ever needing treatment and die of something else.

While that is true for some CLL cases, it is definitely not true of all. This leukemia varies greatly between individual patients. There are benign cases of CLL and very aggressive cases of CLL, and many that fall somewhere between the two.

Dr. Dyer gave a well-publicized interview in which he was asked about having cancer in Parade Magazine...

Q  How is motivational guru Dr. Wayne Dyer doing since being diagnosed with cancer?--Joe DeLaigle, Newport News, Va.

A  "I don't think of it as cancer," Dyer, 69, says. "It's chronic lymphocytic leukemia, not life-threatening, and it's been a great blessing in my life. We're all infinite spiritual beings having a temporary human experience. Find that within yourself.'"

I thought of him today as I was trying very hard not to "give in" to having a virus. I told myself repeatedly that I probably wasn't sick. I believed there was a good chance my little episode this morning was triggered by stress and anxiety. I was supposed to have a few friends over tonight for a painting class. We've been planning it for weeks. And I did not want to cancel. I told them all that I was sure I would be feeling much better by 6:00 and if they weren't afraid to be around me, I still wanted them to come. I told myself, "I WILL feel better."

And then I started to ache and feel chilled. Next I ran a temperature of 101. I spent the whole afternoon in bed. And I felt really bad for about five hours. About an hour ago I was able to drink some hot tea and eat a piece of toast. I think the worst has passed. But I was sick. Stress may have lowered my defenses a bit, but that wasn't the whole story.

Dr. Dyer's words are no more true of CLL than my words were true of not having a virus. With those words, Dr. Dyer greatly minimized the health threat of having CLL and, in doing so, he diminished the seriousness of the battle so many patients are engaged in ... for their lives and also for quality of life. CLL most certainly IS life-threatening. It is incurable.

Those remarks were insensitive. And it upset a lot of patients. A lot of patients with CLL look fine. And many times friends and family have no idea just how serious their condition is or what they are going through because they do not LOOK sick. So statements like this only make it harder for some to be taken seriously.

We need funds for research that may eventually lead to a cure. So, when someone with such a public voice declares that an incurable blood cancer is not really even cancer and is not life-threatening, it can have major consequences for research dollars. CLL doesn't get the attention that other cancers, like breast cancer, get to begin with.

My mother-in-law had to go to the ER recently and told the ER doctor she had CLL. She was bleeding and wanted him to know that her platelets have been affected. She said he looked at her as if he had no idea what she was even talking about. So don't think that comments like Dr. Dyer's won't have a negative impact. A positive attitude is great, but it is no substitute for knowledge.

And all these thoughts came from my inability to feel better just because I wanted to. LOL.

Comments

Randy Shannon said…
Shari,

Dr. Dyer was on the PBS channel here tonight... I thought briefly about watching him, but chose not to. Since his ill conceived remark, I have seen three CLL Colleagues lose their battle. They must have not gotten the message that their illness was not life threatening.

Dr. Dyers's remarks are typical for the self absorbed new age guru's... they take some aspects from the Bible, God's word, and try to build a dynasty from it.
Shari said…
Amen, Randy.

My dad was diagnoesd with CLL around '97. The doctor at the time told us that it was the best cancer to have, he would probably never have known he had it if it hadn't shown up in a blood test, and it was likely he would die with it, not from it. Nothing was mentioned about prognostic markers or any variation in the disease between patients. I had so much faith in this doctor that I just embraced this "good news" and didn't feel inclined to do much additional research. My dad also had Parkinson's and that seemed like the much greater concern.

My dad has never needed treatment (though he has had many other health issues) for CLL in all those years. And when John was first diagnosed, I thought he would have the same CLL my dad had. But I started reading the latest information and quickly realized how much variation there was in this disease. And, as you know, John is currently being treated for the third time in three years. Thank God CAL-101 seems to be working so well on his lymph nodes. But the other treatments were disappointing and came with side effects.

I wish Dr. Dyer's words WERE true. I wish every CLLer had the benign CLL. But you and I know that probably more than half have either aggressive or moderately aggressive disease.

I don't like it when anyone diminishes the suffering or the severity of someone else's very real challenges. Whether physical or emotional or spiritual. It's so easy to do that when the painful shoe is on someone else's foot and not yours. I am passionate in this way, which is probably what makes me a good patient advocate for my loved ones. It also makes me wince every time I remember Dr. Dyer's comments and the insensitivity he displayed.

All that to say, you are preaching to the choir, Budy!!! Thanks for your comment. And I like the new look on your blog, too!
Shari said…
I hate it when I miss a typo. But I think you know that I do know how to spell buddy. So I will just leave it alone. : )
Never trust anyone without shoes!

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