I think the fact that you struggle with healing. I have found that a preliminary stage of recovery for anybody who has been very sick is the willingness/desire to share with family/visitors/strangers about extremely personal information; the T cell count, how many sucessful trips to the bathroom- whatever the marker of progress in one's particular disease. A sign of further healing is the taking back of personal privacy- reshouldering the burden of maintaining expected social decorum. That said, when one has been through terrible things, and one can almost hear them thump quietly when passing by the dungeon they have been bricked into, its pretty natural to feel almost unloyal to oneself to give a throwaway "Fine, you?". Some things demand a nod, even a faint acknowledgement, like "I've been having a little trouble with my lungs. Thanks for asking", or the like. Most will let it go with that; the few who ask more probably will truely care if you share more.

Sent by Jane Smigocki | 8:04 AM ET | 03-22-2007

Leroy,
3 responses come to mind (all by George Carlin)...

1) I'm not unwell, thank you
2) I am moderately neato
3) I am reasonably sufficient. Thank you for your inquiry.

Cuz that's all you got now BABY!

Enjoy NED!

BTW love the mass mailing NPR sent me last night. Count me in!

Sent by Michael (caregiver survivor) | 8:20 AM ET | 03-22-2007

Leroy,

Have you decided to do anything different, now that you're tumor free?

I'm fighting a nasty brain tumor, and I keep wondering what I did to make it happen. Could it be I'm standing too close to the microwave? Is it this cell phone I inevitably hold right next to my tumor? All that is supposed to sound silly. But that's the position we're put in -- what did I do to cause this?

Do I become a vegan? Well, I haven't yet, but I have cut out all meats with nitrates/nitrites, something I didn't give a passing thought to when driving thru Arby's to get their delicious BLT.

Should I go all organic? We bought a "share" in a local organic farm last summer, and picked up our bag full of organic vegetables every week, but more often than not they got thrown away after we never got around to using them. How many times a week can one realistically use Kale anyway?

So my question to you is this. How are you changing your lifestyle to try to prevent those inevitable cancer cells in your body from regrouping into a tumor again?

Sent by Jordis Ruhl | 8:45 AM ET | 03-22-2007

Leroy,

In an earlier post, there was some discussion about the isolation of having a disease, of living in a bubble, etc. Having something amiss makes a person feel different, even if it doesn't show. It's like having a secret...puts a wall between you and the people who don't know.

Personally, I think it's just fine that some people don't know my business, but with others, I want to share. Maybe the key is giving a throwaway answer to a throwaway question, but when someone really cares, hop over that wall and tell all. Good for both of you.

Sent by Diana Kitch | 9:01 AM ET | 03-22-2007

"How is your wife ?"

I must have been asked that several hundred times over the last five years. People never think about what they are asking. The answer is either A: She no longer has cancer, but I don't want to talk about it. Or B: She has had a reccurence, and I don't want to talk about it. Once in a while, when I've had enough, I take the time to explain how unthoughtful that question is, but all I get is a confused look.

I firmly believe that 'Don't ask, don't tell' is the best way to approach conversations about your cancer or someone elses cancer.

Sent by Art Johnston | 9:07 AM ET | 03-22-2007

Leroy,
I hear everything you are saying. I had a lumpectomy and lymph nodes removed and the Drs. believe I'm cancer free. Just in case however, they need me to go through the insurance plan of 8 rounds of chemo and 7 weeks of radiation. So I try to believe for myself that I'm cancer free and they are being really cautious. But then I work in a hospital and know that one cell could be swimming around in there. It's truly an odd place to be. Thanks for all you insightful comments and questions.

Sent by Lisa | 9:12 AM ET | 03-22-2007

Dear Leroy,
"After my treatments ended??? the prickles of 'How are you?' sabotaged my attempts to move on." After years of being in and out of treatment, this is what I learned about surviving the question, "How are you?" http://www.wendyharpham.com/surviving_how_are_you.htm
Hope it helps. With hope, Wendy

Sent by Wendy S. Harpham, MD | 9:56 AM ET | 03-22-2007

A wry smile from me as I read today's entry... I, too, have a nasty chronic cough, courtesy of 8 wks' radiation therapy. (similarly, my CEA is still elevated, so we know there's tumor...lurking..."SOMEWHERE"!) But when concerned strangers want to rescue me from choking on my own phlegm, I tend to hack out: "Allergies!" which is partially true... I DO have allergies & chronic sinus issues, which aggravate The Cough.
Hang in there, Leroy, I enjoy your blog!
Best wishes, Val

Sent by Val | 10:11 AM ET | 03-22-2007

i am still "wearing" my bald female head ...sometimes covered with a scarf , sometimes not. people look at me with that "look" which i despise....i will always ,no matter what ,never feel like a "victim" to this beast. i refuse to submit to cancer...i will never allow the beast to claim the person that i am...NEVER!

Sent by marianne dalton | 10:21 AM ET | 03-22-2007

Yah! Caffeine. More Caffeine, that's the ticket. For me anyway... I love my caps.
I think most people who ask, are really asking because they are concerned... Don't brush it off or give too much information. As we say when giving "the talk" to our children. Just answer the questions...
I send you much energy, light, & joy filled days...

Sent by Sondra | 11:43 AM ET | 03-22-2007

Thank you Genevieve for the inspiration. By ridiculous I meant I am wasting my time being depressed and trying my best to pull myself out of it.I have so much to be happy about I don't understand why I'm not. I guess that's what depresseion means. I must pretend that I am happy and I will become happy. To Robin and Leroy, I have a dilema too, that you both are and have gone through. My oncologist isn't sure if I should due chemo again to be on the safe side. He said that right now I am too weak but maybe in a couple of weeks we can do another round of 3, which means Xodal everyday and the port chemo 3 more times. I am not sure what to do. No cancer shows up right now, the surgeons are confident that they got it all. Back in 1995 I had chemo after my mastectomy, to be on the safe side and one year later I got lung cancer. After that surgery I had no chemo and have survived for 10 years cancer free, until now. If I do not do chemo and can get another 10 years out of it, I'll be happy. Oh, what to do?

Sent by Ruth White | 11:57 AM ET | 03-22-2007

Hi Leroy -

I remember well the dilemma in answering "How are you?," when asked by both those who knew I was getting chemo and those who hadn't a clue. I always answered "Can't complain," which satisfied those who hadn't a clue. To friends and colleagues who knew about my cancer I could expand on my answer - if I felt like it. As for how to feel about yourself: It's my understanding that everyone has cancer cells in their bodies; when some cells start multiplying "unnaturally" then you "have cancer." Since I've been "cancer free" I answer "I'm well, thanks." And it feels great to say that. Try it!

Sent by Ann Stern | 11:57 AM ET | 03-22-2007

My treatment ended nearly two years ago. We were as aggressive as we could be in dealing with my cancer, so even if there are any floating cells or even if my immune response is deficient again, I know that I did what I could. So people who know that I had cancer will ask me with great concern "How is your health?" I just say that I'm fine and that I don't have cancer unless I find out that it's back. It's a bit of an uncertain world that I inhabit. I think that I will always carry that knowledge somewhere that I'm healthy until a test shows otherwise--though it's not at the forefront of my mind. It's now part of who I am, and I realize that I am not yet willing to totally let go of it. Maybe I never will. But I have pretty much moved on, and since I have no outward signs of the disease any more, I do not get questions from strangers. Yay!

Sent by Maggie | 12:04 PM ET | 03-22-2007

Leroy, I liked (and wholeheartedly use the response, "I am okay, thanks.", something I learned from you a few months back, remember?....but here's an Irish response I like to add to your repertoire: "Stumbling along between the immensities." Anne C.

Sent by anne coulter | 12:36 PM ET | 03-22-2007

I find reading this site to be as comforting as visiting with a dear friend. Dr. Harpham's link was particularly helpfful today. As a 15 month survivor of Stage IV primary peritoneal with mets throughout my abdomen, I do truly feel that I know myself better now than ever before. My When someone makes the effort to approach me ask about my condition, I can almost always find strenght in the interaction. If not, there is always a new addition to the "can you believe that" file of anectdotes I discuss with those closest to me. Everyday has its own opportunity.

Sent by Cathy Bybel | 1:18 PM ET | 03-22-2007

I can tell the difference between sensitive people who care about me when they ask how I am and crude people who are tinkering with their own fears of death and disease. The latter group asks questions because they have some morbid curiousity about my disease how I am able to co-live with it. When I am asked a question I feel too delicate or personal or scary or crass, I respond with, "Well, like you, I am not getting out of here alive." That shuts them up.

Sent by Susan P. | 1:27 PM ET | 03-22-2007

I worked up the nerve today to go out with my 1/4" hair in full glory. But alas, my lunch date canceled. I've been going to the gym for a month, sans hat or wig, too hot, and am learning to ignore the feeling, and reality, that people are staring at me behind my back. I'm also learning to live the "strut". I'm feeling great, losing weight, getting stronger, and enjoying the buzz that comes from escaping death once again. I have noticed, Leroy, that some of my "joyeux de vive" is actually "joy of caffeine". I'm sure the feeling that I must live everyday to the fullest will fade as time goes on. Then I hear something like John Edwards wife's cancer is back, and I remember, strut, cause you never know.

Sent by Marcia | 1:36 PM ET | 03-22-2007

I LOVE Anne's Irish quote and can hardly wait to use it! My response to just about everyone who asks how I'm doing is "Do you want to see my scars?" and I flash them before they have a chance to answer. So much for the rhetorical question they were asking. I have noticed that a lot of people are avoiding my however. I no longer have any modesty, but life is so much more fun when you haven't got anything to lose.

Sent by Patricia | 2:34 PM ET | 03-22-2007

Leroy- Congratulations on your NED. My thoughts are with you and I hope your cancer never again dares to rear its ugly head.

As for today's topic, I have two anecdotes to tell.

When I was first diagnosed, my fianc??e and I were walking in front of the cancer center when we ran into an old friend of his, a woman who has been battling cancer for years. This was the first time I had met her and she asked how we were and what we were doing at the cancer center. When my fianc??e related to her that I had just been diagnosed with colon cancer she looked at me in the eyes and paused. "F__k" was her response. I think it was the best response I've received so far. It really summed it up and I can think of no better use of that particular expletive.

A few months after my surgery to remove the tumor, I finally felt well enough to go out. We went to a book reading by an author friend of mine. Many of my friends were there, both close friends and acquaintances, friends who I'd seen during my convalescence and some whom I had not. I felt so awkward with everyone's eyes on me. I know that all of the "how are you" questions were meant from a place of kindness and concern, but it felt like I was under a magnifying glass. Afterward, I related the story and my feelings to a wise friend of mine who said this: "It takes a lot of energy to be that person." I think that's at the core of the "how are you". It takes energy to think of a response. Millions of options are flying through your head and it's painful to relive the pain, nausea, diarrhea, etc of the last few days, let alone try to relate that to another person.

So, now when people ask, I pause and think of how much energy I'd like to expend at that moment and tailor my response accordingly. If I'm not in the mood I usually just say "I've been better" or some other pity response and if I need to talk, I go further.

I address this question a bit further in my blog. Feel free to stop by:

shortcolon.blogspot.com

Just remember that healing takes energy. It is not sitting at a desk and filling in spreadsheets, but it is work nonetheless.

Sent by Megan | 2:42 PM ET | 03-22-2007

2nd post of the day...as i arrived at radiation today i could not help but be reminded how fortunate i am to be me! yes ,me with cancer, as i looked and listened around the waiting area to other cancer patients i am constantly reminded how fragile we all really are with this disease. we can question every angle and theory but we will never really know what the future holds ..ruth ...i am so right here for you as i know that all of our fellow bloggers are too; each of us facing enormous desicions for "our" future together.

Sent by marianne dalton | 2:54 PM ET | 03-22-2007

Just yesterday I was asked the same question by a former neighbor of mine, who I haven't seen in way too many years. I knew that she was genuinely interested; but I also seemed to have a sense that she hadn't known about my cancer. I also knew that she had lost her husband within a matter of weeks of a stage IV diagnosis many years ago, and she is now just emerging to move on with her life. I couldn't bear to bring her back to that awful place. So, I replied, "I've had my ups and downs," and we moved on from there. I can tell her some other time.

I've decided that it won't hurt me at all to assume that anyone who asks the question does so out of genuine interest. And I can set the tone with whatever response I think fits the situation.

Sent by Sheara | 5:30 PM ET | 03-22-2007

I always respond with "Havin a great day...never had a bad day" or with "finer than a frog's hair split 4 ways"...got to love those southerners! It makes them smile and makes you even believe that you are grand.....

Sent by karen | 6:43 PM ET | 03-22-2007

To Ruth:

I just read your post telling about your multi cancers. Please, Ruth, allow yourself to be depressed! Cry, be angry, whatever you need to do to get those feelings out. They aren't ridiculous. They make perfect sense. If you are clinically depressed, there are medications that can help. Every time I think about Leroy, I will also think about you - in case positive energy does anything. Bless you.

Sent by Diana Kitch | 6:44 PM ET | 03-22-2007

The other problem that crops up with the "How are you?" dilemma is how to respond after you've been diagnosed with a reoccurance. Obviously, close friends you tell...but those that are less close such as aquaintences, it is much harder figuring what to say to them. "Oh, my cancer is back." "Oh, I'm having chemo again." I wish somehow people would just know and I wouldn't have to explain it over and over again. One of the difficult things about it is that I lost my hair with my first chemo and everybody has been excited to watch it grow in. With my new chemo however I won't be losing my hair and since my hair is still very short (only a 6 month remission), people assume that I'm still doing fine and go on and on about how great it is to have it all behind me and now have hair. I really hate to burst their bubble. There is no "polite" way to tell them when they've been gushing over your health. What a crazy worry to have, huh?

Sent by Martha | 9:07 PM ET | 03-22-2007

I found it most difficult to answer "how are you?" when I had lost my hair, lost a lot of weight and had a tremendous amount of muscle atrophy. Obviously, things weren't going so great. I knew most folks genuinely wanted to be supportive, but there were times I just didn't have the energy to give more than a quick answer.
The answer "some days are better than others" seemed to work well for me. It let me accept good wishes from folks without going into a long conversation.
As my health returned, it was easier to deal with things-- finally I could say "some days are better than others, and today is a good day."

Sent by Jean | 9:35 PM ET | 03-22-2007

How are you, Leroy? You're great! That's how you are.

She was probably worried that you had TB or something catchy like that.

Sent by Marilyn | 9:41 PM ET | 03-22-2007

I hope that the next time I'm asked "How are you?", it goes differently than it did earlier this week. I was completing a mountaineering class last July when I was diagnosed with Stage IV rectal cancer. I had a chance to visit with my classmates before we split up for the summer and I shared my news, but promised to return when I got past the cancer. I've kept up with a few of them via e-mail since then, but had a chance to actually meet them again this week at another class. I don't look "sick", but I'm not pretty either - the Erbitux rash is unattractive. I guess I was expecting more, but I never really got to answer the question "How are you?" before they quickly filtered away. So now I wonder - were they really interested in how I am, or just felt compelled to ask, but didn't really want to find out? It just seemed very odd, and I found myself enjoying talking with people who don't know I'm sick to be far more satisfying - no cancer baggage to work around.

Some questions for those of you on the NED side of the fence - do those old friends ever get past your cancer, or do they just stay creeped out? Do you just move on and make new friends and keep your cancer under wraps? I'm beginning to question my philosophy of being open and honest with people when they asked what my prognosis was - I always responded that I would be happy to give them as much information as they were comfortable in handling. Maybe some were not as comfortable as they'd thought they'd be. I'm not dancing with NED yet, but hope to be in a few months if my progress continues. I'll be thinking more carefully about my response when I'm asked "How are you?". In the meantime, maybe I just need more caffeine too.

Sent by Bob Maimone | 1:29 AM ET | 03-23-2007

We all chose how our day is going
to be just like the movie, The Good The Bad and The Ugly, for those of us who are free of cancer but were once diagnosed with it.

I remember advice that my doc told me, continue to live your life as before as normal and as regular as it was before you were told you had cancer.

Otherwise it may consume you in more then the phyical way. Good advice let go of the why me or the what if's.

If I concentrated on the one comment while in the elevator at the hospital going for my first radition consultation and later rounds of treatment, The nurse asked so how did you get the big 'C' I replied "don't know to late to care I'm moving on"
I am now on year 20 cancer free
The answer is as long as I'm breathing
G O O D.
Cheers,
jim

Sent by Jim Borland | 12:47 AM ET | 03-25-2007

I have a dear friend who continues to fight his recurring hodgkins. He's in Houston at MD Anderson, as our home hospital has just suggested he consider quality of life as there were no more options for him here. Does anyone know of any other treatment trials to pursue? he's only 21 and has been battling since he was 16. He's wearing down.

Sent by Janet | 3:54 PM ET | 03-26-2007

Leroy.....you don't know me but I feel as though I've known you for a very long time. When you were our daily contact about upcoming Nightline programs I saved every letter (I even wrote to you in thanks at that time.) I've been following your cancer story even before NPR carried your blog. I was concerned when you had to leave ABC because of your cancer and have tried hard to keep in touch with your story as well as keep you in my thoughts. I, too, am a cancer survivor -- My husband recently died of it and am now doing what I can to help a daughter in law through colorectal C.

The conversation the past few days has been very interesting regarding death. I'm in my 80's now, but I don't think my feelings about dying have changed all that much. As you, I'm just not ready.... My main reason for this comment is to share with you a quote I heard a long time ago from the author, Penelope Lively (I'm almost sure it was her). I claim it now as my standard answer to how I feel about dying: I'd rather not hurt a lot, but mostly "I don't want to be written out of the narrative." God bless, you, my friend.

Sent by Marilynn J. Condon | 4:12 PM ET | 04-04-2007