Aside from a cure for cancer, not much could be better than knowing that none of us goes through this alone. When you're the only one among your friends and family who have cancer, it's an isolating feeling. That's why this blog, and cancer chat sites, and cancer support groups are so valuable. Thanks for being our "poster boy".

Sent by Nancy K. Clark | 7:17 AM ET | 05-02-2007

Leroy,

I have another take on this issue. My webpage keeps all my friends and relatives informed about what's happening with me. But when things are quiet, as they are for you right now, it's nice to set aside the daily focus on cancer.

I limit my updates to once a month when there is nothing going on. It let's me return some normalcy to my everyday life and I avoid (as much as is possible) the daily dwelling on what my cancer is doing.

This is just a suggestion. Try limiting your blog to every other day at first to see if it makes a difference.

I know you feel an obligation to all of us who write to you. But your first obligation is to yourself and trying to live your life not totally absorbed with your cancer.

Sent by Cindy | 7:52 AM ET | 05-02-2007

Leroy, you are right- you (and we) are not alone as we go through this cancer experience - either as patients or cargivers. My husband and I learned that when he was diagnosed with pancreatic cancer.

This valuable blog creates an eclectic community of support and education. It may even encourage clinical interventions, unknown to most. For example, how many patients are now asking their doctors about RFA as an adjunct or substitute for chemotherapy?

You don't know how many people you might be helping by sharing your story. Thanks for doing it!

Sent by Marilyn | 7:58 AM ET | 05-02-2007

How about "Not having to walk this road at all"?

Sent by Stephanie | 8:58 AM ET | 05-02-2007

I hope you get support out of writing this blog because that's what you give to all who read it and respond. It is hard to think about it every day and some days I don't think about it. Reading your blog doesn't force me to think about it but instead directs my mind on how to feel better and live my life. I am getting better and trying to focus on that and not think about the fear of reoccurence. It is always comforting to know that others share your feelings and that is the gift you are giving with this blog. Thank you. I have shared with my patients(I am an RN) about my cancer sometimes when it is appropriate and find that it helps them to cope with their disease or pain so as difficult as it might be in the end we are touching others in a very positive way.

Sent by Vicki | 9:14 AM ET | 05-02-2007

My sister and I were talking about this very thing yesterday. What would I do if I didn't get up every morning and read Leroy's blog? She hopes that you will write a book and include most, if not all, of this chronicle of your life. I for one have learned so much from you. Like Marilyn stated...I too have asked my doctor about so many things I have learned from you. But most of all, I doubt you had any idea when you started this that you would build a group of people who support each other and interact. People who care about each other, answer questions, wait for results when someone is scared, and truely feel they have found a friend in you and in all of the people that comment. I have come to talk about you as my "friend Leroy, that writes a blog", and Marilyn, Karen, Ruth, JJ....it's a wonderful thing to be able to affect so many lives and to find a source of comfort and friendship....and all from people you have never even met. Keep writing my friend.

Sent by Patti | 9:31 AM ET | 05-02-2007

Dear Leroy,
Years ago when starting my shopping for a prosthesis (what fun) I go a pin that said, "I belong to a community of hope." Even though it's been almost 14 years (and 2 prostheses later) I still think about that phrase. I believe that the blog is an ongoing community of both support and hope, especially during the times of difficulty and uncertainty. My great thanks once again for bringing us together in this fashion.

Peace,

betsey kuzia

Sent by betsey kuzia | 10:01 AM ET | 05-02-2007

I do think about my cancer everyday. It's such a weird one leaving me with an uncertain future as it grows as soon as the chemo doesn't work or we try to take time off. It's location is weird, the doctor says its' weird. Finding the right person to talk to about how to live my future finally came right down to my oncologist. Family weren't helping, friends based their opinions on their lives, my doctor said he has tried to place himself in my unusual shoes and wondered how he would continue to live his life . Not knowing if it would be 6 months or 10 years. We concluded to try to live as I would have without cancer, not to live to die. And I am grateful I don't have the worry of this chemo not working yet. Your blog is my most positive help in the cancer community and the JHU biliary cancer discussion group is another - a small number of us and their caregivers rally around,even as the group is everchanging due to the lethal nature of our cancer. Thank you for helping me go in a positive direction with my daily thinking.

Sent by Cheryl | 10:02 AM ET | 05-02-2007

I started my blog as part of the growing "daddy blogger" movement, but it ended up serving as the information station for my son's treatment when he was diagnosed, as well as a place for me to voice my experience. Getting it "out of me" has proven incredibly therapeutic, and as it happens I know that my words are helpful not only to family and friends, but to those who have stumbled across my blog and told me about their experience and "not feeling alone".

Although, I'm looking forward to the days when more than an hour can go buy without thinking about my son's cancer.

http://vampdaddy.blospot.com

Sent by Vampdaddy | 10:26 AM ET | 05-02-2007

this blog has enabled me to let you all in on what is really going on in my head...something that i find is at times difficult for family and friends. the fam and friends ,co workers, tend to ask the "physical" questions about the disease..only this blog and your daily entries have allowed me to express the emotional thoughts, feelings, concerns i have about the disease. your blog, for me , is better than a real life support group in the way that you address a topic and it gives me a time to reflect , perhaps write about it , in a way that i wasn't getting out of a real life support group. this blog and all the persons that take the time to respond are far more up lifting in thought and content and what i get out of it is so far , fulfilling in more ways than one!! i thank you leroy and all the "regulars" for your positive, realistic, encouraging words . your truest feelings by the way of print have gotten me through all of this!!!
my heart goes out to all of you and i will never forget the "connections" i have felt since finding this blog during the most fearful time in my life.

Sent by marianne dalton | 10:57 AM ET | 05-02-2007

Leroy,

I just read a novel that was written by a Russian author. He was diagnosed with Lymphoma a few years ago and got a poor prognosis. He started writing a blog on internet every day, which eventually turned into a book. He created a fictional character and gave him his disease. The author has recovered then. He explains the happy ending of his ordeal in a his interview:

"There was a man, who one day got Lymphoma and he couldn't decide anything better, but to write a book. Somehow, giving the disease that he has to a fictional character, cured him. . When the author eliminated the borders between reality and imaginary, he in a way made some shaman ritual. His fictional character has recovered and he has recovered from Lymphoma. Of course, in reality he recovered because of medicine and treatment, but in some mystic ways, the fiction that he created carried over his disease from reality into imagery

Sent by Tatiana | 11:55 AM ET | 05-02-2007

I think this blog not only allow us to know we are not alone but also allow us to voice our feelings and experiences without having to spare the listener's feelings. I find it often that when I tell friends about my son's cancer, they quickly ask "he is ok now, right?" without wanting to know the details. This blog is a great place to voice the details and the feelings.

Since my son have been off treatment for four years now (knock on wood), people stop asking about his illness. But we still have to go for quaterly check-ups and still have to live thru the side effects of chemo (hearing lost due to chemo). Just because he is off chemo doesn't mean that we can forget he had cancer. I think it is an experience that we will have to live with forever. I find that this blog helps me voice my anxiety and depression to people who actually understand what it is like.

Thank you Leroy for having this blog. It is incredibly therapeutic.

Sent by grace | 12:28 PM ET | 05-02-2007

Leroy,

Alone is bad enough; alone with cancer would be unbearable. There are many groups and therapists and social workers who give "professional" help. That is necessary and laudable. I happen to like this better because we all seem to be friends who are sharing our lives and experiences. Such a feel good for me - glad it feels good to you as well.

Sent by Diana Kitch | 12:33 PM ET | 05-02-2007

I got thinking more on the whole "chemo brain" topic. If chemo essentially cleans you out from stem to stern of all rapidly dividing cells what are the effects of areas in the brain cortex such as the prefrontal lobe and hippocampus, where short term memories are processed? Can medications specific to other functions in those areas assist in the possible degredation that may occur under chemo. Needless to say I could have probably used a valium at points during chemo treatments myself.

Sent by Ehren Heyer | 12:43 PM ET | 05-02-2007

Mr. Sievers, you have no idea how much I rely on your daily blog to keep my sanity. At 73, I can no longer drive (bad night vision and really bad reflexes for driving a stick shift sports car) so I must depend on our city's Paratransit to get around and it quits running at 5:00 p.m. Therefore, support group meetings that always seem to meet in the evening are out of the question.

I feel that all the readers of your blog are my extended family and it is comforting to talk to and read of people who are experiencing the same physical and emotional issues, each in their own way. I would be lost without the comments of Marianne Dalton, Nancy Clark, Diana Kitch, JJ, Cheryl, and others.

Please don't reduce your blog to every other day, as has been suggested. I need your insight and, yes, your wisdom to get me through the day.

Brenda Y. Lynch

Sent by Brenda Lynch | 1:04 PM ET | 05-02-2007

I think about cancer every day, even though I am in remission. Some people like to try and forget it, others, like myself, need to keep gathering and processing the information.

Leroy, you have touched on the "touchy" subject of death by cancer. A certain school dictates that cancer patients must fight an ongoing battle, never ceding defeat, never entertaining a single thought about death. I'm wondering, though, does that mean we all live in a pathological state of denial? I've seen women talk about that final chemo brew that's going to cure them right up until their death. Does being positive and having a "fighting spirit" (another cancer buzz phrase) mean never gaining psychological or spiritual insight into the dying process?

This is so hard to talk about. Other cancer patients find it to be unbelievably negative. Family finds it unbearable to even think about. Friends are usually far too unskilled in talking about disease and death to even broach the subject.

I, for one, am hoping for at least 20 more good years, but if that's not the case, I hope that I WILL go gentle into that good night.

Sent by jane | 1:11 PM ET | 05-02-2007

Hi Jane:
In the 4 years since I was given citizenship in Cancer Country I have heard so many philosophies- fight it, ignore it, religious faith, get all the info, etc. My take on these differing approaches is, "Whatever helps you, personally, to get through these trying times is fine with me."
I listen to all these views because one of them might change my mind, change my way of dealing with my Cancer. To challenge, or deride, someone's method of getting through their crisis is to
place onesself in a higher position than they have a right to occupy.
I hope you continue to talk about how you feel. Don't hide your thoughts about death and dying. There are a lot of us out here that listen to all thoughts of our fellow "Citizens." If it helps you, it helps me!
Don

Sent by Don Winslow | 3:00 PM ET | 05-02-2007

We're Not Alone:

Last Monday, my opthalmologist spotted a tumor entrenched around the optic nerve behind my left eye. Since I have already received maximum radiation in my facial area, radiation is probably not an option now. I have notified my support group of this "breaking news" situation. I favor telling them rather than drag my immediate family through this unfortunate situation. They tend to over-react if I tell them something negative. I don't like or need that kind of stress. My mom is the worst! My friends can read the latest breaking news on my CarePage update from M D Anderson.

Yesterday, my "big boss" manager at work put me on long-term disability for poor job performance. I already knew this was coming because she had been avoiding giving me assignments to do over the past few months. She also said that my appointments at M D Anderson were taking up 30% of my work time and she needed someone who could "be there" when she needed them. I acted as though I was shocked by the "news", however, inside of me, I was elated and relieved. My place of work had turned into a sweat shop over the past couple of years. I don't respect bosses who are not upfront with me initially. My having cancer doesn't mean they have a right to postpone/avoid "walking on egg shells" when you've got some bad news to tell someone. I am already supposedly dying, so do you think dumping some more "bad news" on me is going to really make a big difference, duh?

So I will be at home "recouping" during this LTD period. My LTD will last so long as I am alive. Now there's a really good insentive to wanna live longer, LOL! My company even agreed to pay the first three months of my Cobra insurance, fa-la-la-la!

How does that expression go about "death is just a entry way into another horizon"?

Sent by Larry Hamm | 3:04 PM ET | 05-02-2007

So many things that others have said today ring so true for me! Like Cheryl, I think of my cancer every day, like it or not. Like Nancy, I am the only one among my immediate family and friends with cancer, and it is so isolating. Because, like Marianne said, the emotional questions/issues are so tough on family and friends - you don't really want to put that baggage on them, because so often they just don't know how to respond. The feeling of community I have gotten from this blog family is beyond helpful.

I'm looking forward to the Discovery Channel show, Leroy - and am so happy that you are here to see it!

Sent by Gretchen Hoag | 3:44 PM ET | 05-02-2007

Living thru the cancer experience certainly hones your appreciation for life. When I find myself becoming overly stressed about an issue that clearly doesn't deserve the heightened response, I think about my days when I was embattled with the disease. Cancer provides a solid reference for perspective.

Sent by Gregg | 6:01 PM ET | 05-02-2007

As I read and re-read these postings one thought springs to mind. I am hearing the thoughts of others. It is no longer just my own train of consciousness running through my head- I am reading the trials, tribulations, and meanderings of others that are effected by cancer. I can talk to my wife, parents, brother, etc., but never really know the struggle they have been and continue to go through for MY life with cancer.

Sent by Ehren Heyer | 9:09 PM ET | 05-02-2007

Leroy,
Shortly after my diagnosis of cancer I began writing a blog. Recently, a local journalist asked me the same question you were asked. "What do you get out of writing the blog?" I provided my standard reply:" I blogged to keep friends and loved ones updated, and later it became my therapy." The journalist was sharper than I suspected and said, "But your blog is different. You write about all kinds of things - not just treatment updates. And besides, your treatment is over. Why do you still write and expose yourself?"
I have given the question a lot of thought. Not long ago I had to delete my blog because it cost me a job. I started a new one, "Survivorreflections" that is as anonymous as I can make it. But the journalist's question still haunted me. "What do you get out of writing a blog?"
After a recent moment of enlightenment I realized that people were getting something useful from my blog. I've always enjoyed creating great ideas but assumed that no one really needed or wanted to know what I had to say. Guess where my tumor was? It was in my throat. My voice. Right near my heart-the container for love, for myself and others.
You are right, Leroy. We are not in this alone. Thanks to you and NPR, those of us with cancer can connect with a community of survivors and supporters. I hope you get something out of that.

Sent by Happy To Be Anywhere | 11:32 PM ET | 05-02-2007

About employers and insurance.

Be sure to be realistic and do your best to dot all your I's and cross your T's on your benefits. Some large companies don't really have life insurance through a company but rather select an insurance company to manage the company's(your employers) insurance program. The employer then sets aside a pool of their own funds to cover deaths. But when it's(death) expected the employer may do some managing of that risk.

In the end as was our case, the insurance was no longer there.

Sent by Undisclosed | 1:29 AM ET | 05-03-2007

Dear Leroy, I was very upset to hear the news that you have cancer. You may not remember me, but I traveled with you and worked with you as a volunteer with the red cross during the aftermath of hurricane katrina. we both traveled on that old smoking bus down to southern mississippi. I remember that you, as well as myself and others, had exceptional vigor at "resourcing" various household and healthcare items: diapers, formula, candy for kids from the "lot" for bonus distribution on our E.R.V. routes. As well, I remember your amazing upbeat spirit in the face of adversity. now I am aware of the life experinces you have had to draw such spirit from. I hope you do well as to keep such a positive attitude and spirit in the face of such an intimidating disease as cancer. from the notes I have read on your blog it seems that you certainly have. one last note is that we have more in common probably than you could ever imagine, for my father was a news correspondent like yourself. he was the anchorman for WSIL, an abc news affiliate for southern illinois. he too was inflicted by cancer and, as you have, chose to go public with his battle, doing chemo on air, and brodcasts with a tupae on. Unfortunatley, he lost his very public battle with cancer, but I am assured daily that through his choice to battle cancer publicly he has inspired multitudes of people to be more courageous with their "battles". On that note I am very proud of you, Leroy, to choose to go public with your battle, as to inspire others to be as coureageous with their battles with this devastating disease. Hopefully this will help get more attention focused on finding a cure.
Sincerely, fellow red cross volunteer, Shaun Caldwell, Carterville, IL

Sent by Shaun Caldwell | 1:40 AM ET | 05-03-2007

I read everyone's response and noticed a recurring theme. We need to keep in touch with our cancer so we are reminded to get on with our lives. I too forget about my cancer at times. I have ringing in my ears due to chemo from late 2005. It never goes away, but I do forget about it a lot as I get on with my daily activities. Of course now I hear it. My constant reminder of my cancer. For me remembering my cancer keeps me in balance. It helps me to realize what is important in my life.

Sent by Betty in Germany | 2:29 AM ET | 05-03-2007

Leroy -
I had a funny experience yesterday - not directly related to your topic, but probably something the family can relate to...
Quick recap - My wife is 33 undergoing rectal cancer treatment and I'm 40 w/ CLL. Anyway... I always thought that when I was confronted with something like this, that there would be some epiphany, that I'd be kinder, gentler and more tolerant since 'everyday is precious'. Well every day IS precious and I find my tolerance for stupidy, apathy, driving with a cell phone stuck in their ear (in the left lane), waning! A reduced tolerance level... Now that, I didn't expect.
Cheers!
Tim

Sent by Tim | 8:59 AM ET | 05-03-2007

Thank all of you for your insights into our difficult situations. I am "new" to this world of cancer, diagnosed in February. Two issues consume my thoughts most days:
1. Who am I now? I used to have a fixed identity, not perfect, but at least it was "mine." Now my little cozy world has been invaded by "medical strangers." Yes, they are trying to save my life, but they will never understand what cancer patients phyically and mentally endure.
2. I, too, live in fear of losing my job due to medical absences. I can identify with the shabby tratment dumped on Mr. Hamm by his employer. My imediate boss winces evertime she must sign a sick leave form for me. I am now hearing that I am "too slow" and "the work is not getting done." In this twisted world, I sometimes wish my cancer would be Stage 4 instead of Stage 2. If my cancer were worse, at least I could be declared disabled and escape from the woman and her insensitive comments. I'm getting this after my surgery and I have not even started chemo or radiation! God help me then. I have yet to tell her "the C word", but tell her that I am very ill and if I do not receive treatment I will die.

I hope to remain standing after the treatments I will be receiving this summer. Knowledge of a possible positive outcome keeps me going, but the journey will be terrifying.

Sent by banannaquit | 10:21 AM ET | 05-03-2007

How wonderful to know (that we're not alone.) It is a sobering experience, having cancer, it DOES make life more precious and makes decisions ABOUT that life more precious as well.

Sent by Mike Williams | 10:20 AM ET | 05-04-2007

I wanted to know if you can give a resource to contact people with cancer and those in remission which will enable me to share my feelings and learn more about the emotional aspects of cancer.

Sent by JUDY | 6:38 PM ET | 05-07-2007

I have pancreatic cancer. I loved your show but felt thats not how real people are treated. When I go for Chemo or procedures people are not nice. There is no compassion. Come follow me to my cancer visits and chemo I think u will see a different picture. I also had colon cancer. I have a new primary cancer and I am fighting this all over.

Sent by Harvey | 10:25 PM ET | 05-08-2007

Leroy, It is so mentally draining, to attempt to be normal again. I love to work with my hands, to be outside, and I can't anymore. This disease takes you away, all that you were is now different. You work at getting better, but we all know, the cancer is still in there, somewhere. It takes real bravery to face this disease head on, and try to overcome it. Thank you so much for your words, this Blog helps in ways you can't imagine. Stan

Sent by Stan Wozniak | 9:49 PM ET | 05-15-2007