Bravo!

Sent by Chris | 12:14 PM ET | 08-14-2006

Defiance ? that?s what it is. You have captured the issue perfectly.

My wife has been on her journey since May 1999 when she was diagnosed with inflammatory breast cancer. Like you, she has had a reoccurence in recent years - spots on her spine found via a bone scan. Like you, she goes for "low dose" chemo twice a month and will continue until it doesn?t work anymore. Then the docs will try another drug.

But in exactly two weeks, we will take our youngest daughter off to begin her college career. And that simple trip to upstate NY to bring her to school will also be an example of "defiance."

When my wife was first diagnosed, she feared she would miss our daughters? journey through high school - field hockey, the lead in the spring play, graduation, and the senior prom. But she did see all that and now she is packing our daughter up for college.

When we set out in two weeks to drive her to school, we will pull out of the driveway waving our flag of "defiance" too (it may look more like my middle finger) — and when we stop for dinner that night — I will toast my daughter, my wife, you, and all the others on their own journey of defiance.

Sent by Joel Widder | 12:26 PM ET | 08-14-2006

Just sending prayers and blessings your way.

Sent by Jackie Brando | 2:32 PM ET | 08-14-2006

Funny, but my acts of defiance are related to diet as well. Coffee... real coffee, not the decaffeinated kind. I insist on having some at least a few times a week no matter what the nutritionists at the cancer center have to say.

Beer is another. Although I waited eight months from the commencement of treatment, I finally decided to say "No" to too many admonitions about the occasional alcoholic beverage. I can?t say the experience was memorable, after all my son chose the beer and his college-level appreciation of beer is linked inexorably to the price, not necessarily the taste. Nonetheless, it felt good to just do it!

Sent by Don Spencer | 8:52 AM ET | 08-15-2006

I much prefer a word like "regenerate", or "energize the spirit", to the mostly pejorative quality of "defiance." It sounds like hate and anger are the ammunition for defiance. In my case, with Stage 4 lung cancer, I have been amazed at how positive my day-long attitude is now, knowing that in my limited time remaining, anger and flipping the finger can only lead to deeper resentment and self-indulgence in the past instead of peace and beauty for the future.

We?re about the same age, I think. I can?t feel very resentful at having had seventy-two years of merry making, and the totally accidental luck of not having been subjected to living with AIDS, starvation, torture, child abuse, genocide, loss of children to attacking war lords, etc.

Your spirit, Leroy, has been wonderful so much of the time. Keep that fount open till the very end, which in my opinion may go ad infinitum!

Sent by Bob Gamage | 8:53 AM ET | 08-15-2006

Leroy - Yes, I understand the defiance feeling. I?m in my second series of chemo for ovarian and I, too, want those cancer cells to know that I?m buying new clothes for next season and planning trips into the future. So there, damn it! Also, I told my husband yesterday after reading some interesting obits in the paper to make certain he does not write anything in my obit (years from now of course) that I passed peacefully, etc. I want it to read "she was dragged kicking and screaming from this world." Hope you?re feeling better today and soon will be eating Klondike bars or whatever is your cold passion.

Sent by Marjorie Nelson | 2:28 PM ET | 08-15-2006

Defiance has a good ring to it— a willingness to contend or fight. This implies that what we do as patients, or survivors is show that we are willing to fight. Lord knows our foe is strong, it knows no rules, it has no limits on its ability to impact and change us and like any schoolyard bully confronted by the skinny kid with big glasses, your act of defiance may be the only thing it will encounter that it can?t control. Our defiance is something we can control, and at times, it seems that it is one of the few things that we control. I realize this sounds like tilting at windmills or some other homily, yet as a patient in an active treatment program, we have far too few things that we can control. I read the posts here and am amazed at the number of us who fly in the face of recommendations and drink coffee, or eat forbidden foods and I fully understand the response which is: I want to be in charge of SOMETHING. I remember once, a year or so ago, while waiting for the results of yet another test and in another moment of introspection, thinking that my life is being controlled by something over which I have no control, I felt helpless. I had managed to steer myself into a place where I was powerless. I stayed in that funk for the rest of the day, miserable and crabby and mostly going with, and accepting being out of control. I felt like poop. That evening I sat on the deck, with my evening drink, my wife, a cat and a beautiful evening and I realized that I was like a cow, being driven to market, I had become one of the herd. I had let the disease become my driver, the trail boss, the reason for my existence. In a long career I had fought others in their attempt to drive me and control where I went. Well, I too went to defiance that night, a positive defiance combined with a willingness to fight and move beyond the herd. Yet I also knew that the mere act of defiance was not enough. Simply fighting was not enough, I needed something else, and that was when I really started paying attention to the sign in my window, the sign I mentioned in an earlier note, my big "believe" sign. My defiance has now grown from a simple willingness to fight, which took a few hits along the way, (the other guy gets a few hits in also), to a combination of responses which I felt put me back in charge. Each of us decide where we want to go in this fight based on our personality, our innate strengths and the value we place on our ability to control our lives, so if it takes defiance to get to a place where we know we are doing things for ourselves, we can write our own "Cinderella Man" story. We may not "win" but the dirty rotten troll is sure going to know it was in a fight. Oh, that brings up the other thing I did after deciding to fight back, I gave my cancer a face, a personality, a history, a goal and before long it was easy to bring it out, because I knew what it looked like, how it acted and what it feared. My cancer became a particular troll I remember from an old Grimms? fairy tale book I had as a kid. It was much easier to fight when I knew what it looked like, knew that it could be hurt, knew that I was in charge. They may be strong, and ugly, and implacable, but they generally live under a bridge somewhere and lay in wait for us. Once we call them out and see them for what they are, they lose some of that control over our emotions and thoughts. I mean, how could we not fight something with the look, sound, feel and attitude of a troll? I suppose we could also run, but that never seemed like a viable option. The troll may still win, but the ugly sucker will know it?s been in a fight. And so too will I.

I think about you every day and have a candle burning in your honor. I also think about the people who write you and send each of them some thoughts as well. No matter who we are and what we are facing, once we decide to go to battle, win or lose it can be a good fight. Sure as hell beats the alternative.

Sent by Beryl Rullman | 8:34 AM ET | 08-16-2006

Leroy, thank you for your thought-provoking and inspiring writing! Thank you, too, to all of you out there who have shared your encouragement and thoughts. Leroy, you?ve created a wonderful internet global village. I?m making a request right here for NPR to graciously keep your postings up permanently if possible because who knows who might be diagnosed with cancer in the future and have need of pointers on how to deal with the diagnosis, be of better assistance to someone who is living with cancer or simply know that others, too, shared the same feelings of fear, concern, defiance (I love your concept!), and the rest of the whole nine yards that come with living with cancer. Leroy, your writings and everyone?s postings have provided a wealth of information - a precious form of cancer treatment and therapy of its own unique kind, treatment for the soul and the psyche.

I?m coming up on my own one year anniversary of being diagnosed out of the blue with colon cancer. My gastroenterologst told me had I waited till I was fifty (this year) for my first colonoscopy, she and I would have had a totally different conversation about my results. Cancer is sneaky. Had my six months of chemo cocktails with oxaliplatin - fluorouracil.

I thought I had it all figured out already what my life game plan would be after I finished chemo this past March. But Leroy, your writings have given me reason to fine tune that plan. I?m going to spend some moments each day to think of you, Leroy, and all of us on the same journey, the people who love us, and others who have generously supported us along the way. Like many of you out there, I?ll say a special prayer/think good thoughts. Leroy, here?s wishing you many pleasurable and defiant moments in between!

P.S. By the way, in a previous writing you asked how some of us made it through the tough times. During chemo, I posted photos of my family and friends (most of whom live far from me) everywhere in my house, even photos of my friends? dogs. Those photos triggered such powerful feelings of love within me during those uncomfortable times and had such a wonderful long-lasting effect on me.

Sent by Mark Quiming | 1:08 PM ET | 08-16-2006