Well said. I'm also bothered by people who invalidate my experience by bringing up examples of people with completely different situations. And you're right, no one is going to mention the many people who've died of cancer. Those of us with cancer are well aware of those who don't make it and think about them often. What really did help, especially when I was first diagnosed, was being introduced to others with the same type of cancer. Rather than being told, "You'll be all right because my cousin Fred is all right," it's better to hear something like,"I know someone who just had treatment for the same type of cancer. He'd love to talk with you." I often took people up on that and found great support and advice.

Sent by Jerome Frank | 9:37 AM ET | 09-28-2006

I think that what people are doing by giving stories of others given a grave diagnosis who beat the odds is twofold. First, they are trying to give hope that things may not be as bleak as the doctors are saying, and secondly, a subtle version of what I was talking about yesterday — they're not able to deal with your possible death, and are doing a version of "keep positive" and "keep fighting." They language around these illnesses that are couched in military terms, and urge us on to "keep fighting." That the outcome may be out of our control is too scary for most people to cope with. That being said, I wish you well on your journey.

Sent by Nancy K. Clark | 9:40 AM ET | 09-28-2006

Mr. Sievers, I like your response, "That's great for that person. But I have my own battle to fight, and we don't know how this one is going to turn out." I, too, never know how to handle those stories, whether they are encouraging or disheartening. People mean well, I hope, but often speak out of ignorance. But I understand that, since I was ignorant before I started on this cancer journey almost a year ago. And I was ignorant even though I participated in my dad's care for years while he fought with but eventually died from his cancers. I am more sensitive now to people's comments and stories, but always try to remember that they mean well and are trying to wrestle with their fears, too. We all live in the shadow of the fear of having cancer, and it's difficult to deal with, especially when someone you know "suddenly" has their life affected by cancer.

I greatly enjoy your daily commentaries. So often you express eloquently what I am feeling, but find so hard to put into words to explain to others. You also give me much to think about! Thank you for sharing your journey, and giving others the chance to express as well. May God bless!

Sent by Karen | 9:43 AM ET | 09-28-2006

Leroy, I understand how you feel, but you are missing the message from these people. They know you may not beat it. But they know that you have more of a chance than you think you do and you may live longer than you think you will, even if you don't, evenually beat it. I may not beat my cancer, but I have lived 2 years longer than projected by my doctors here in NYC, and I must say they knew what they were talking about. They are world-class oncologists. I am not saying be cheerful, but being realistic involves understanding that the statistics include that tail at the right hand side of the graph of survivors. Being realistic involves knowing that in fact, some people live a very long life with cancer. You will meet some of them during chemo, and you know some of them from here. "Dealing with uncertainly, living with hope," as Dr. Jimmie Holland says.

Sent by Cathy Wilder | 9:46 AM ET | 09-28-2006

Leroy, I soooo hear you! I have been mulling this one, too, because I was actually surprised by my response. Why can't I go with their hope? Am I wallowing in my own misery, so sure of my impending death, relishing the (self) pity?

Having looked at it and mulled a bit, I have come to a different response. I have stage 3 pancreatic cancer. The prognosis, as noted on my chart by my doctor is "poor." I have looked at some of the statistics on the Internet, and it just keeps getting worse. No need to go into details here, but I needed to process this, to absorb it, to figure out what it meant for me and how I was going to live with it. Yes, I say ?live with it," because until I am dead, I am alive. But to deny what is the most probable future denies me the ability to live consciously. When I hear stories about the person who is still alive 15 years after pancreatic cancer diagnosis, I feel as though I am being told that my take on reality isn't real.

That doesn't feel so good. I found myself starting to doubt my sanity, like why was I so pessimistic about my future? Am I going crazy? Am I paranoid to be worrying about dying? Well, frankly, I don't really need to be doubting my mental health along with my physical health.

I finally came to the conclusion that the emperor really isn't wearing any clothes. I may live long and prosper, but I would totally have my head in the sand to assume that. And I would make different choices if I thought I had another 30 years. Those choices would be to delay, and defer. Instead, I am choosing to do and to go while I can, with the appreciation that one day soon, I might not be able to. I have no regrets, I don't feel depressed about dying. And that feels much better than thinking I am going crazy because I am the only one who thinks I might not make it to 85.

Sent by Stephanie | 9:49 AM ET | 09-28-2006

Leroy, what a gift you give all of us! For those that just don't know what else to do but share the happy-ending cancer stories, you give a perspective that they may have never considered and one the person they are addressing would have never uttered out loud. I also appreciate that some of us defy the odds, or just fall on that side of the odds. Since cancer is not just one disease with one treatment, we all have vastly different experiences with it. Different treatments, different outcomes, which are all very PERSONAL. Before cancer became a part of my life, I'm afraid I was probably one of those "share a happy story people" or I would just shy away from the whole conversation altogether. Now, if I decide to have that conversation with someone else and they are willing to talk about it, I know giving them the PERSONAL attention they deserve is ultimately my goal. That means listening more and talking less, expressing love and compassion, and, God forbid, touching them. Underneath it all, that's all I ever wanted when someone decided to talk to me about it. So, having that gift to give back ... well, let's just say it's one I never expected to have, yet one that turned out to be so incredible.

Sent by Missy | 12:06 PM ET | 09-28-2006

Leroy, I think I understand how you feel when people tell you how so-and-so beat the odds. When I'm told those stories, it almost seems like they are making light of my situation — "It's not all that serious, so-and-so beat it, you will too, you'll be fine," I want to snap back and say, "You don't know that." Don't make light of my situation. You're right, Leroy, everyone is different, and we are all unique individuals. You do the best with what is dealt to you. I think saying those "beat the odds" stories makes them feel better, then they don't have to deal with the gravity of the situation. Does this make sense to you or am I being negative?

Sent by Ruth White | 12:14 PM ET | 09-28-2006

I think those kinds of comments from well-wishers serve to assuage their fears more than to comfort those of us with cancer. People without cancer want to avoid the bitter realities, even those who "don't look sick" or have better than average prognoses can still have recurrences and die in relatively short time periods. But no one wants to confront that. I often hear, "your type of cancer is very common, you'll do fine." Yes, I know cancer in general is widespread, common, public reality. But to me, it's still personal. I just wish once someone would inquire how I feel, what my own perceptions are, my own fears, my own thoughts and not be so quick to inundate me with stories of others and how common it all is. Love you, Leroy, I look forward to the blog each day.

Sent by Sherri Eggleston | 12:19 PM ET | 09-28-2006

Have you ever noticed that obituaries for people who have died from cancer often say "So-and-so lost his battle with cancer yesterday"? You never hear of the deceased having lost their battles with diabetes or stroke complications, for example. When my husband was going through stage 3 multiple myeloma several years ago, he was urged to "keep fighting," as if force of will alone could overcome a devastating biological process. And theres the unspoken reproof that dying from cancer makes one ultimately a "loser." This attitude also instills guilt in the patient survivors, who are subtly made to feel that they too were somehow deficient in their cancer military skills. (If only I'd urged him to try that brown rice cure or pester him more to engage in those visualization therapies touted by our well-meaning friends!) Leo, keep on writing about your own experience. It is yours and yours alone. No one should ever be made to feel a failure because of an individual outcome of a disease. I think a lot of people are just uncomfortable with their own mortality and find it difficult to discuss death and dying, especially if it's hitting too close to home.

Sent by Karen Garcia | 12:23 PM ET | 09-28-2006

Have you ever noticed that obituaries for people who have died from cancer often say "So-and-so lost his battle with cancer yesterday?" You never hear of the deceased having lost their battles with diabetes or stroke complications, for example. When my husband was going through stage 3 multiple myeloma several years ago, he was urged to "keep fighting," as if force of will alone could overcome a devastating biological process. And there's the unspoken reproof that dying from cancer makes one ultimately a "loser." This attitude also instills guilt in survivors, who are subtly made to feel that they too were somehow deficient in their cancer military skills. (If only I'd urged him to try that brown rice cure or pester him more to engage in those visualization therapies touted by our well-meaning friends!) Leroy, keep on writing about your own experience. It is yours and yours alone. No one should ever be made to feel a failure because of an individual outcome of a disease. I think a lot of people are just uncomfortable with their own mortality and find it difficult to discuss death and dying, especially if it's hitting too close to home.

Sent by Karen Garcia | 3:13 PM ET | 09-28-2006

What would you rather people say?

Sent by Paula | 5:36 PM ET | 09-28-2006

I'm relieved in a way to know that I'm not the only one friends and family say these things to — thank you for bringing it up. I never know what to say when they tell me that whoever it was got to live way beyond doctors expectations. I know it's supposed to make me feel good but being realistic I also know many did not. Now I will use your response. No one is comfortable talking about death and dying — it seems they want to believe we all live forever and those examples of folks winning against all the odds prove it somehow. Well, I don't know how much longer I have but I'm going out fighting. I'll know in a few weeks if this new treatment is working (it sure makes me feel yucky) and go on from there. I look forward to your blog every day — you are speaking for many of us.

Sent by Helen Flint | 5:39 PM ET | 09-28-2006

As insensitive as this sounds, maybe it is not about you. I can see why it bothers you. I will probably try hard not to make those statements ever again.

But maybe they are not saying it to give you hope, maybe they are saying it to give themselves 1) hope and 2) something to say as they try desperately to process this horrid piece of news. No matter how well or how casually the individual knows you, when you tell them you have cancer, you are forcing them to reassess both your relationship and their perceptions of what will be. And you bring mortality back to the forefront - no longer can it be an unwelcome guest banished to the very edge of their consciousness. It is invited in to sit next to them.

At that moment they may need to have hope for you. As a friend, colleague, or family member, they need a way to give themselves hope that they are not going to lose you. As another living individual, they need to stave off their own fears about death. And often they need to do that while simultaneously holding a conversation with you.

And most of us find frank discussions about death, particularly our own fears about death and an unacceptable topic. Particularly here in the U.S., most of us have been able to avoid confronting our own mortality. So rather than discuss your possible death or their fears, they tell you the story of someone who made it, trying to give both of you some hope.

Sent by Naomi | 5:41 PM ET | 09-28-2006

It could be worse....

My father died of cancer in 1990. (In many ways, he "beat the odds," simply by being a perfectly healthy, 43 year-old man who had never smoked a cigarette, yet ended up dying of squamous cell carcinoma, larynx & lung).

His mother used to come visit him daily in the hospital (during his various ins and outs) and would read to him obituaries that she had cut out of the newspaper — only of people who had died of cancer.

To this day, my family has never figured out what possible good she thought she was doing — even my poor Dad could not defend that behavior.

I can well imagine that these types of comments are annoying. But perhaps now, when you hear these comments from people, you can smile and think that at least they're *not* telling you about all the ones that don't make it, like my crazy Grandmother did.

Sent by Kaela | 5:43 PM ET | 09-28-2006

Right up there with those comments are the ones I hear about "other clinical trials that you HAVE to look into"! Yes, people mean well, but they act as though they've decided what the cancer patient should do. My melanoma is suddenly turning very bad, but, no, my husband and I aren't flying all over the country for some to raise our hopes when I have excellent care where I am. I would much rather hear from a friend or relative, "I don't know what to say," and reassure them their being there & hearing me out is a blessing.

God bless, Leroy!

Sent by Eunice | 5:45 PM ET | 09-28-2006

We have all heard the comments about "my friend is still alive..." but I think it is a well meaning but uninformed response. Most folks don't know (myself included prior to being diagnosed) about the many different forms of cancer. I have a very rare, very aggressive breast cancer (oops....I mean I had as I am currently cancer free) but there are many different types. When I hear "a cure for cancer," it drives me crazy because its not a generic thing...it has to be customized.

Sent by Ellen Macaulay | 4:55 PM ET | 09-29-2006

I think most Americans (I'm not sure if it's as true of other nationalities) feel that when presented with a problem, they have to offer a solution, preferably one that is sunny and optimistic and has to do with conquering great odds. So they tell us about all the people who have had miraculous cures or they try to insist we read this book or try that herbal supplement. They mean well, I guess, but it is basically disrespectful. Wouldn't any intelligent person know his/her own prognosis better than anyone else, now that we all have the internet at our fingertips? Wouldn't we have already given serious thought to which treatment/doctors/facilities might benefit us most? I wish people would understand that the best thing to do when they learn a friend has cancer is simply to say "Im so sorry" and then just listen! Beyond that, I do like it when people tell me they are wishing me well or praying for me or whatever. But the starting point should just be an acknowledgment that they don't know what the outcome will be, any more than I do.

Sent by Doris | 5:12 PM ET | 09-29-2006

To Stephanie: sadly, you're not the only who doubts you'll make it to 85. As I prepare to give birth to your first grandchild, I am acutely, painfully aware of how little time I may have left with you. (In fact, sometimes it feels like I have a bleaker outlook than you do!)

I love you, Maman, and no you are not crazy!

Love from your daughter,

Mara

(I do talk to her, but it felt appropriate to respond to her in this forum.)

Sent by Mara | 5:15 PM ET | 09-29-2006

I am among those with cancer... with melanoma.

Sent by Beverly A. | 5:17 PM ET | 09-29-2006

I understand completely and often don't know what to say. I have stage IV breast cancer, I am currently in remission. When people hear I have breast cancer they automatically assume it's a walk in the park. Everyone knows someone who has come out fine with early stage breast cancer and I hear about it all the time. I feel morbid telling them that mine is not that simple and that yes, I am doing fine now, but it could turn on a dime. When I first found out that I had breast cancer I remember telling my mom "don't worry, no one dies of breast cancer anymore." My reply was out of total ignorance of the disease. Most people that do not have cancer really don't understand the battle and don't really know the right things to say... if there is a right thing.

Sent by Sherry | 5:21 PM ET | 09-29-2006

Leroy,

Thank you for hanging in there and writing this blog. I check it everyday and read the comments. It is a tremendous support to realize that I am not alone and that others have the same thoughts and impressions that I do. Lately I have been hearing a lot of these "they beat the odds" tales. I think what is going on is that folks are struggling to be supportive and that they just want to toss out a ray of hope for us to grab on to. Now, what we hear when they tell us these tales of hope and miracles is something different because it is, after all, about us.

I just sat through a conversation with my oncologist that has left me at a loss. He started it out by saying "let's not panic." Okay, while that is always good advice, it may not be something you want to hear from your doctor as he clutches the results of your latest blood test for your cancer marker. He went on to tell me about one patient that had gone asymptomatic for five years before they needed to start the chemo treatments again, and another one for two years with elevated markers before the cancer returned.

While driving home I asked my husband what he had heard my doctor say. He said he hear that there was hope that even with the above "normal" cancer marker results that didn't mean that we had to start the cancer treatments again anytime soon, that we needed to wait to see what the next test results showed and that one sample didn't make a trend. I said that what I heard was that he was talking to me, about my life and he was talking about it in terms of years in single digits!

So when I hear the "they beat the odds" tales I just nod and I think to myself "Oh God, I hope they don't start telling me... well, we could all be run over by a bus."

Sent by Sue | 5:44 PM ET | 09-29-2006

I also have cancer, breast cancer. I found out I had breast cancer in Jan. 2000. Had chemo and did alternative treatments to fight. I was 6 yrs free and it returned stage 4 on March 2006. I was living in Missoula, Mont. with my four kids, had the best job employment specialist with a great supportive company. Unfortunately this time around it is a little tougher, been in and out of the hospital 3 times and needed to move back to Oak Park, I'll where I grew up and have the support of my family and also the have support for my 11-year-old son who is with me. My other three children are in college in Montana or working. Yeah cancer can throw a wrench but it is what you do to stay positive and make the best of the days you have ahead. Being in a cancer support group helps and looking forward to activities also helps. I have a very supportive family here and in Montana which also helps. I like your column and look forward to reading now on a daily basis.

Sent by Mary Thompson | 5:46 PM ET | 09-29-2006

Thank you for bringing that up! I think the reason it drives me crazy is that on some level it minimizes my situation. I know that I didn't do that before my diagnosis because everyone I know has died of their cancer and in pretty short order. Of course if you protest that maybe you wont be the lucky one in a million, you're branded as being "negative". I just nod my head, take a deep breath and say something like "How wonderful for so and so."

Sent by Patricia B. | 5:54 PM ET | 09-29-2006

Since I've been diagnosed with cancer, I've been overwhelmed by those seemingly positive remarks. Like you, Leroy, I large part of me wants to reply, "Thanks for sharing; unfortunately I am not your grandmother." I also know the conflicting feeling of not wanting to offend some well-meaning person. Too many times, I've told people about my diagnosis and all I see is a look of uncomfortable bewilderment in their faces. It seems they don't know what to say or how to respond. What they don't know is that Im not looking for a response. When I confide in someone about my diagnosis, I'm not looking for pity or sympathy. I'm sharing the news with them because I think they should know. Perhaps the best response I have received was from someone I just met. I had known him for only a couple of hours at the time. We were hanging out in a coffee shop, and I told him I have cancer. He replied, "You're still Michael. You're still my friend, and there's a hell of a lot more about you that's far more interesting that being a cancer patient."

When I heard those words, I was moved. I literally felt chills all over my body. I think it was one of the nicest things anyone has ever said to me.

Sent by Michael Everett McGalin | 5:56 PM ET | 09-29-2006

Leroy, thanks again, don't take this the wrong way but the comments seem more helpful at times than what you have to say... at least today.

Thanks to all of you for that. I was on a cancer blog last night, and I read nothing but how people have lived beyond the doctors expectations. Should this make me feel better? I still have to practice in staying present...no matter what the outcome is...

Sent by Meredith P. | 5:58 PM ET | 09-29-2006

Thank you for saying that. I felt the same way — and everyone says it — when I told them my father had cancer. "Well my mother had it and she died." "But this is different."

Please say, "I'm sorry to hear that." Compassion, validation can break through the loneliness. And Leroy, I'm really sorry.

Sent by Niki | 6:01 PM ET | 09-29-2006

My first time reading your blog. It was recommended by our support group cancer counselor. To "join" this group one is stage four. We started this group because we were possibly scaring the women in the regular breast cancer group with our cancer progression stories. Your thoughts are touching and really hit the mark. Thank you so very much for writing.

Sent by Kathrine Grinnell | 11:31 AM ET | 10-06-2006

Hello - I have read from the beginning to this point today in your blog. I saw it for the first time today and bookmarked it. I'm exhausted from reading and cannot go any further today. I was diagnosed with breast cancer 9 months ago and finished my chemo 3 months ago - how time flies. Your blog is great and I'm amazed at the similarities in all cancer patients. Who knew? We are all bonded with how cancer has taken over our lives. I always say there is "good with bad" and I can honestly say it has not all been all bad so far. Yes, I would prefer not to be a part of this club, HOWEVER, we are not given that choice. I immediately started blogging for mental release and it truly does help. http://mhb-mylife.blogspot.com/ For now - I wish you well - I will continue reading after I digest all that I've read today. It definitely is an overwhelming subject, isn't it?

Sent by MaryAnn | 12:46 PM ET | 12-08-2007