Friday, September 07, 2007

NOT the "Good" Cancer

Chronic Lymphocytic Leukemia (CLL) is often described as "the old man's disease" or even "the good kind of cancer" by medical personnel. These descriptions anger those of us that have it. Although the first description may fit me, it doesn't fit many, many others I know who are female and/or in their 40's, 30's and, in a couple of cases on our support sites, 20's. Certainly NONE of us would ever call it the good kind of cancer.

We have lost many good folks to this disease over the years, but recently we have had a rash of losses that have saddened us all. Just in the last few weeks, we lost Dee Davis from the ACOR list. In my last post, I wrote about the passing of Kurt Grayson. David Arenson wrote a wonderful tribute to Kurt on his blog HERE. Kurt's death was followed by the death of a dear sweet lady, Phyllis Keeton on September 3rd.

Phyl was a vibrant, humorous, positive, wonderful lady. She was diagnosed in June 2004, and after several chemo treatments, underwent a Stem Cell Transplant on March 29th this year. Initially she did pretty well and then she developed complications. She fought a good fight. On March 1st, as she was preparing for the stem cell transplant, she wrote this:

And I don't worry. I won't get one day added to my life by worrying. I know there are risks, but life is full of all kinds of risks, no matter how "safe" we try to be. There's a song that says:
"I'm a winner either way
If I go or if I stay
Cause I'll still have Jesus with me
Each passing day
I'll have a healing here below
Or life forever if I go
Praise the Lord,
I'm a winner either way!"
I'd like to stay a while longer, 'cause I think there's things left for me to do, but when the time comes for me to go, I'm still gonna be a winner! Phyl

Phyllis has her final healing and she is a winner.

On September 5th, DeAnn, a caregiver member of the CLLForum, lost her father to CLL. He had been diagnosed only two years ago. It just seems as though sorrow is being heaped on top of sorrow. There are several on both of my support sites who are not doing well at all.

At the end of July, two national figures, newsman Tom Snyder and NFL football Hall of Fame coach Bill Walsh both died from CLL. And of course last year Ed Bradley of 60 Minutes fame also died of CLL. These famous folks dying of CLL is what made even more amazing a comment a doctor made to me last month.

Many folks on my support sites, the CLL Forum , CLL Christian Friends, and ACOR, report that when initially diagnosed their doctors told them not to worry because they had the good kind of cancer. Well, it finally happened to me. I had an endocrinology appointment last month and I saw a new young doctor who had just joined the practice. This young doctor really blew me away. She wasn't quite 30 years old. Besides some annoying comments like, "Wow, it sure is hard to tell what symptoms goes with what because you have so much wrong with you," I finally got the "good cancer" speech. She said, "I see you have CLL. Well, that's the good cancer to have." I replied, "yep, same one my Dad died from three years ago."

Genuinely shocked, she said, "He died from it? That's unusual. I didn't think anyone died from CLL. I remember distinctly in medical school they said you don't die from CLL." I told her I guess they forgot to tell my dad that and all the other folks I knew who died who were members of the Internet groups I belong to. She was embarrassed.

Of course, after I left there, I realized I should have said, "Well what about Tom Snyder, Ed Bradley, and coach Walsh?" I also should have taken the time to educate her a little on CLL and also let her know how it really annoys folks who have it when we hear that it is the good kind to have. Now, granted, this new young doctor's specialty is not even close to CLL, but what the heck are they teaching these folks in medical school today?

Obviously a lot of doctors are being fed this nonsense. True, we know what they usually mean, but still, there is no "good" cancer. If it is so "good" I will gladly let them have it instead of me. No, actually I would not wish this on anyone. I had a doctor not long ago who, in my opinion, did say it properly. He said that none if it was any good but if I had to have any of it, this would be the one. I knew what he meant. There are many types of cancer that are more aggressive and cause much more pain and suffering.

This is from Tom Snyder's blog, April 2005, when he was first diagnosed (same time as I was). He said this:

"Anyway, my doctors assure me this is nothing to worry about, and I have to accept that, I guess. They say this kind of leukemia is not fatal, that people can live with it for thirty years. I looked up chronic lymphocytic leukemia on the Internet and found a source that predicted people who are diagnosed early can live up to twelve years. Those who are not diagnosed early--and the website does not define "early"-- have a survival rate of about two years."

Isn't it sad that Tom had to get his information from the Internet and not from his doctor? How prophetic it was for him that he did die just slightly more than two years after diagnosis. I often wondered if he ever went to see a true CLL specialist.

One of the things I think that may contribute to the perception it is a good cancer is that the vast majority of us do not look sick at all. It is a cancer of the blood, bone marrow and/or lymph nodes. Except when the nodes get exceptionally large, the effects are not usually visible to the eye. In July, another member, Gary E., died and only a day or two before he passed his wife posted a picture of him in his hospital bed surrounded by friends and family. Even though I knew how critical he was at that time, I was struck by how well he looked!

When folks die because they couldn't fight off the pneumonia or other infection, the cause of death isn't usually listed as CLL, but rather as pneumonia or respiratory failure, or whatever the infection was. I think this may contribute to the myth that CLL isn't serious.

When I posted some of the above on my sites, it got a lot of reaction from folks, especially on the forum. I wish I could post all the replies, but I thought I would post this one from the CLLCfriends site. I didn't ask his permission, so I won't use his name, but I think he said it pretty well:
' Yea! I've love going thru chemo 4.5 times in the last 6 years. I really enjoyed the nausea and the diarrhea so bad I had to use diaper rash med. cause it burned so bad. I did get a nice vacation in St Louis Mo. at Barnes Jewish Hospital. Great room service! The tri- fusion catheter for the three bottles of poison I had to drag around on a pole was great. Then when they ripped the catheter out because it fused to the muscle and I was only given a local, also great. I am also grateful for the 18 different meds I have to buy every month, didn't have nothing else to do with riches.................. " So thanks doc." But after all being said I have grown closer to God.'

One last point. It is also true that there are many folks who have a very indolent form of the disease. For them it never seems to progress and if there is some progression it does not seem to cause problems. I have read of cases where folks have gone for many, many years with no treatments and no problems at all. Those are not the majority of folks I know. Even though Dad had chemo several times, he did survive for 20 years with this disease.

Fortunately, I am doing well. No matter how this post might sound, I am not depressed, just frustrated with the loss of so many wonderful folks to the "good" cancer that isn't so good after all. Please pray for the families of those who have passed and for those who are struggling right now. If you found this blog because you are newly diagnosed with CLL and you did an Internet search, it is not all doom and gloom, I promise. I'll be more upbeat next time.

(By the way, I didn't think too many folks actually read this blog. Three days ago I put a visitor counter on the blog. I started the count at 100 because I didn't want to look bad with only one or two views. HA. I just looked and the counter is over 200 right now - it is at the very bottom of this page. As of last night, I have had 89 unique visitors since Tuesday morning. That amazes me!)


Loren said...

Fantastic entry John. I do not always comment but I do watch for the updates so that I can have a look.

Some of the recent passings I do not know, but each one always strikes a chord with me because I am them, they are me. But I should not complain, after all I do have "The Good Cancer".

Take care and God Bless,

Fran said...

John - I always read your blog!
The profound sorrow on the loss of our CLL friends is carried by many.

Thank you for a heartfelt post to dispel the myths, and the frustrations that oft times consume our days.


Anonymous said...

I read the good, the bad, and the ugly almost daily, whether you have posted or not. I always pray for you and your family! I am thankful that I did not have CLL but I am also thankful for the wonderful group of people I found on the forums.

Anonymous said...

John, I have the "Good Cancer". I was dx at the age of 29, yes, that is twenty-nine. Found out when I went in for a prenatal checkup and lab work. My O,b. doctor told me not to worry, I could live another 30 or 40 years. I saw a CLL specialist, and he said, well, lets just say you are pretty young to have this and hope and pray it does not become aggressive. That was April 3. 2006. I am now getting chemo FCR. I have a baby, a husband, and a home, and the Good Cancer. What is there to complain about? My suggestion is: when your doctor speaks about good cancer, get the hell out of there and find a CLL doctor.

Karen said...

John, I know what you mean! Myeloma is also called an "old man's disease". That certainly doesn't apply to me! I was also told by a nurse, "If I had to choose between leukemia, lymphoma, and myeloma, I would pick myeloma." Would anybody really choose ANY of these diseases?

Marc said...

Great post John!

Anonymous said...

and with my visit the counter hit 500!
I'll keep coming back, if you'll keep writing.

Anonymous said...

Just a short note. Our family Doc of this small town just retired because he has CLL. I wanted to know more about it and to know what his future looked like. He is 61 or 62 and I don't know how long he's had it. Thanks for the very good info. God bless you all.

tippythehippy said...

I couldn't understand why when my doctor diagnosed me, I left feeling like I was alright. By the end of the day, I went home and studied. It really is sinking in that I may be dieing sooner than I expected. After reading this, I understand why the doctor acted like it was no big deal.

John Wagner said...

tippythehippy Since I wrote this there has been a tremendous amount of advancement in the treatment of CLL. In fact, several of the experts believe we are not very far away from an actual cure. Also since I wrote this there are many new treatments. Some in trial and some approved. Please don't give up hope as there is always hope. I am beginning my 12 year with CLL in just a couple of weeks. (I really should start posting here again.)

Anonymous said...

Thank you for the post.
How are you?
My CLL is slow progressing. Am one of the fortunate people.
Think I am into the 12 year.