It would be a great legacy.

So many writers seem to have a great depth of understanding that could be shared.

Sent by Jack Burrington | 7:36 AM ET | 08-30-2007

Dear Learoy et al,

This blog is already "an oral history project" par excellance! My Mother used to say that "you can't put an old head
on young shoulders". Often cancer, like war, makes us look older. And wiser. Our collective wisdom is here for those with the will to seek out and take in. Bless us one and all- we are all living legacies.

Sent by Kathleen | 7:55 AM ET | 08-30-2007

Leroy...good morning! I think about writing about the journey but sometimes it seems too depressing. Maybe I really don't want others to know what each day is like. I had rectal cancer and extreme surgery. Every day for the rest of my life I will pay for that cancer. I can't eat anything without worrying how and when it will affect me. I can't be more than five minutes from the bathroom without being horrified that something will happen and I will need to be there NOW. No canoe trips for me....even trips by plane or car are a juggling act. No one wants to hear about it and I cannot blame them. That adds insult to the injury of my body. Fresh corn this summer...can't touch it. Watermelon, better not. But through all of this, I am still here. I have lived to see my daughter graduate from college...again. So I count my blessings and try to hide the very lonely time I spend in the bathroom each day. Yes we do all have a story and I am certainly glad your story is being told.

Sent by Lucy Lee | 8:02 AM ET | 08-30-2007

Leroy -

Since the first day I heard your strong voice come through with an audio installment of My Cancer, I wondered what it would evolve into as time went on.

As I watched your special on the Discovery Channel I continued to wonder what would become of this project here called My Cancer. The DC special was excellent, don't get me wrong, but it left me wanting more.

What is it that I wanted? More info about folks here and their stories, more info from the docs, more just more.

The ideas I thought were many and I was always kind of embarassed to suggest a new project to you.

I would love to see a special or a variety of specials similar to "The Lion in the House" which chronicles the treatment process of children and their families battling leukemia.

I'd also love a book, similiar to the NPR book "This I Believe" where you could discuss responses to the topic presented here in the blog.

There are many more ideas that came to mind but I do not want to be a "blog hog" .

Sent by Melissa T | 8:02 AM ET | 08-30-2007

Dear Leroy, I agree with you and try to dairy some and have thought about writing something. But the fact is you have the skill and the commments of the people who write into your blog are highly intelligent and helpful so once again - PLEASE ask that all of this be printed into a book as it will help so many when we are no longer here. That is your legacy to share with even more people "your wonderful writing".

Sent by Vicki (FL) | 8:27 AM ET | 08-30-2007

It is an excellent idea for each of us to capture, in some form or fashion, our journey with cancer. It would not only chronicle what happened but could also serve to say to others who may follow "here is what I learned - medically, emotionally and physically".

I have been fortunate to have a melanoma specific website that I have visited for the last 6 years. It is much like this blog - full of hope, information, education, support. It also gave me the opportunity to write My Story with Melanoma (diagnosis to end of first surgery) to be shared with others who may choose to read it when visiting the site. The site also has a place where you can post your Patnet - your diagnosis, your treatment history, etc. I have kept this journal (Patnet) since I was diagnosed in the hope that others (particularly the newly diagnosed) can go to it and read for information, education and hope. I will continue to update it as things change. It also serves a utilitarian purpose. I can print it when the insurance company needs information, rejects a claim or a drug approval and send it to them.

Your blog (a link to), Leroy, should be posted on the American Cancer Society website. What you offer here is universal for the cancerworld. It is and you are truly unique. In my opinion and it wouldn't be too farfetched to have as a part of a medical school curriculum a required reading of this blog for interns and residents. What a perspective they could receive!!

I do agree that it would be helpful for each of us to, in some way, capture and share what we have learned. Life's hard and even inspirational lessons should not go unread by future generations.

Blessings and prayers.

Sent by Al Cato | 8:34 AM ET | 08-30-2007

Dear Leroy,

You have already fulfilled that accomplishment with your blog. You have already contributed your own special value to life. You have tried to help us fill our days with positive purpose and taught us how to move forward.

It is because of your blog that I know
" I'm not alone" and for this I thank you.

Prayers to you and Laurie. Sasha

Sent by sasha | 8:36 AM ET | 08-30-2007

Hi Leroy,

Why not? Your blog will always be a testament to the uncertainty, fear, strength and compassion we share as cancer surviors, caregivers, family and friends.

I think the wealth of information on this blog should be shared further than online. Remember, not everyone has a computer, has access to computer or even wants a computer. It would be great to have excerpts from here published on paper products, cds, what have you and distributed to doctors, oncologists and therapy departments to give to their patients, direct to the consumer, so to speak.

Sounds expensive? Maybe, but I believe if you do what you love, the money will follow.

Just a thought.

Sent by Teri Thomas | 8:37 AM ET | 08-30-2007

I, too, would love to see this collection of essays published. I, too, have thought of writing about my own cancer, its agonies, and it's odd blessings. Our stories need to be shared. They can bring knowledge and community to future patients and perhaps deliver some comfort and understanding for our families. I read this blog every day but this is my first comment. I think this is an important (potential) project.

Kathy

Sent by Kathy | 9:21 AM ET | 08-30-2007

In 2005, I too, was diagnosed with
(advanced)cancer. In the following two years, aside from receiving treatment, what has become clear for me, is to live each day with the intention of making it count to someone besides myself. Maybe it's sending an encouraging or funny email to a friend or relative. Maybe, it's just continuing to make good food for my husband. Maybe, it's donating household stuff to a young unwed mother. Maybe it's showing, not telling friends, you can live a productive, full life, aside from treating the disease. Life is really short for all of us - with or without the knowledge we're dealing with a disease. None of us really knows when the clock will stop, and then why not live as full and giving a life as we can. The best legacy, I beleive, is to know you have stories, lessons, love, compasion, kindness and whatever,
that are meant to be given away. To friends. To family. To strangers.
Guess the point is, no matter what, spend the time we're breathing living.
Not counting the time until we're not.

Sent by Linda Russell | 9:24 AM ET | 08-30-2007

My mother is a holocaust survivor and we were fortunate enough to get her sister and her into the oral history that Steven Spielberg has begun in a big way. The record is needed so that the holocaust is never forgotten.

Cancer scares people. When people have a better understanding of something, it becomes less scary. There should be a foundation whose sole purpose is to educate people about cancer and how it works. That you don't have to "look like you have cancer." That you may or may not lose your hair, but still feel as rotten. That you may feel good and be good, but tomorrow may change all that. Or tomorrow may see you continuing in your good fortune.

I sure would appreciate some help explaining all this to my family and friends.

Wendy

Sent by Wendy Murphey | 9:28 AM ET | 08-30-2007

Hi Leroy, I just happened to see your
story on the NPR site and it prompted the earlier note I sent. Just by posting your comments, you have obviously inspired and prompted many to respond and connect. Meaningful connections that otherwise would never have existed. Sharing your words and thoughts is one of the most humanly powerful ways to declare "you exist" and "you are here." Thank you.
In closing, I say "sa benedici." An ancient Sicilian phrase meaning, you are in my prayers.

Sent by Linda in Rochester | 9:34 AM ET | 08-30-2007

And yet another great and inspiring story. Leroy, I believe that just like I read stories about the fifties and sixties and how it changed the lives of so many, somebody in the future will read about how all of us has either had cancer or was a part of someone's life that did. They will read about the medicines we invented and will probably say "Boy, that sure is old fashioned"..lol Hopefully, there will be a pill invented that will cause that old cancer to self distruct....that's the day I am waiting for. Have a great day.

Sent by Teresa in WV | 9:37 AM ET | 08-30-2007

Leroy -
I watched that "Crazy,Sexy,Cancer show for the first time last night. So glad to see cancer protrayed as something we live with with out all the melodrama. It is a vivid portrait of the life of cancer patients. I found the meetings with the doctors to be spot on.
What I see in common with the WWII vet are normal people, in extraordinary circumstances, facing uncertainty bravely.
Next thing you know, being a cancer patient will be 'cool'!

Sent by Tim | 9:39 AM ET | 08-30-2007

Hopefully when we tell the stories to our grandchildren, we'll say somthing like, I remember when cancer treatments consisted of being hooked up to a chemo pump for over 6 hrs. Enduring much pain and side effects. Now the only thing your generation has to do is take a pill, wait a few days and it's gone. Wouldn't that be wonderful. Mike

Sent by Mike Race | 9:45 AM ET | 08-30-2007

I started reading this blog when my fiance was diagnosed with stage 4 lung cancer. Without this site, I would not have learned about the different treatment options available to us or how other caregivers have handled their situations. Reading the words of so many of the regular contributors, Sasha, Lucy, Al, Katherine and the many others, I don't know where we would be. All of this should be put into book form, CD, magazine or something, I know I am not alone in needing a place to share, find support and more importantly, just know others are out there fighting similar battles.
This whole site is a legacy for others. Thank you for sharing....

Sent by Laurie | 9:48 AM ET | 08-30-2007

Dear Leroy and All:
Our organization dedicates its existence on the topic you write about today. We give voice to the stories of individuals living with illness through writing and film so that others will benefit.

For those of you wishing to share your helpful and important stories and experiences, I invite you to contact us at voices@communicationinmedicine.org.
My admiration to all of you so willing to help others as you navigate your own lives living with cancer.
Carol

Sent by Carol | 9:48 AM ET | 08-30-2007

Your words here, and the comments and additions by others, are the living history -
this blog should be linked to the Lance Armstrong Foundation website, the American Cancer Society, and the National Cancer Institute, so as many people as possible have the opportunity to share and be comforted by what's here.

Sent by Cindy Williams | 9:48 AM ET | 08-30-2007

Hi Leroy,

I've asked before, but I will put it out here once more, is there any way of getting a copy, vhs, dvd, ??, something, of the "Living With Cancer" program that was on the Discovery Channel? I have contacted the Discovery Channel, and been told that it's up to the "executives" ?? to make it available or not. Can anyone help with this??

Here is something, already done, that could help some people I know personally, and I cannot get it for them. So, yes, this blog is great, and new ideas are great, but I really need a copy of "Living With Cancer."

Like those World War II veterans who are elderly and dying, and soon it will be too late to hear their stories personally, there are people with cancer, for whom it may be too late, and for whom seeing the program "Living With Cancer" could be of so much help. Now. Not later. They were unable to watch it when the Discovery Channel aired it. I am feeling a desperate urgency about this. Can anyone help?

Thanks,
Kim

Sent by Kim Blankenship | 9:52 AM ET | 08-30-2007

We need the great American Cancer Novel. Perhaps instead of novels taking in place in various wars these novels could have at their core the various forms of our disease.

Sent by Dona | 9:52 AM ET | 08-30-2007

Hi Leroy,

Talk about timing of this blog. I was/am considering starting my own blog about my life as I know it. Of course, that would include info on my grandparents and parents, what I have experienced growing up.

Your blog is historic, the members who participate are adding to that history. You should be proud of that accomplishment.

Sent by Sue Chap | 9:57 AM ET | 08-30-2007

Leroy et al

As many of you know, I am a very long term survivor... 32 years to be exact. I was silent about my experience for 30 of those 32 years for various reasons too many to discuss in this comment LOL

2 years ago as I faced my 30th "anniversary", my 50th birthday and my sons being the age I was when diagnosed. This brought me to a very retrospective point in life and I got copies of all my medical records and for teh first time sat down and read them cover to cover. I researched teh information they contained and in many ways "relived" those horrible days, weeks, months and the years to follow.

I sat down and wrote my survival story. I wrote about how I felt and what I experienced. This was an INCREDIBLY cathartic experience which has since allowed me to become deeply involved in many forms of advocacy!!!

Perhaps one day I will seek to actually get my story published.

I believe for many this blog and others like it are indeed that documentary of their journeys. I am grateful you have given so many a voice and a vehicle to express that voice such that others will know we all passed this way.

Thank you one and all

Sent by Ron Bye (NH) | 9:57 AM ET | 08-30-2007

Hi Leroy/all in cancer blog land,

You are so right, we all need to leave some sort of story behind about our life. I've kept a journal from the beginning. And this site is so great for letting the world know more about us.

To Lucy Lee: I feel for you and your "bathroom situation". My mom has crones disease and could not go out etc, afraid of "accidents". But, eventually her doctor recommended a colostomy. And although, she didn't think she could do that, she decided to go ahead with it. She said it was hard to get used to, but now she goes EVERYWHERE! We even drove to Conn from Upstate NY to visit my sister. She is a much happier soul now. Hope the best for you.

Take care all, Carpe' Diem... Shirl Dolitz

Sent by Shirley Dolitz | 10:05 AM ET | 08-30-2007

I started a blog of my own, documenting my days in radiation that im now in. I did start to journal the whole thing but stopped after a while, mostly due to the lack of energy when i was in chemo. Maybe after my radiation and some time has gone by i will start journaling my experiences, but for now my blog is a start. its nothing as interesting as yours is but if it helps one person who may be about to go through rads, then it was worth it. it helps my family and friends see where i'm at too if they dont have time to call. I'm greatful for your blog leroy!

Sent by Jenn | 10:09 AM ET | 08-30-2007

oh yeah, my blog is
http://radiationdaze.blogspot.com/
if any one is interested

Sent by Jenn | 10:11 AM ET | 08-30-2007

I've said from the begining...this blog, and many of the replies need to be published. The colletive wisdom, compassion and sharing that have happened here since this blog first appeared are a precious comodity, and need to be made more widely available. I second the suggestions that this information needs to be offered to institutions that train medical professionals of all types. This kind of sharing can also have wider ripples in the communal pond in ways that may not be first apparent.
As they say, knowledge is power, and knowledge shared can change others' lives. I'm reminded of some British women who've participated in the breastcancer.org chat room. It appears that in their countries, doctors are still treating patients in paternalistic ways, and do not provide much information about their diagnosis, treatment options, prognosis, or really anything. I reacently read a study that confirmed their representation of how breast cancer patients are treated in the UK. Breast cancer (and other cancer) patients don't get the information that they need to make informed decisions about treatment, and have less good outcomes than other European countries. By talking with us assertive Yanks, many of them have learned to be assertive themselves. They now insist on getting their pathology, scan and lab reports, on getting their questions answered, and some have told us how much better they feel since taking some of the power that is their right. If more people learn to demand of their health care providers that they are given full information about their illness, treatment options, and how they're responding to treatment, there might be better outcomes for many patients, and less anxiety related to feeling powerless.

Sent by Nancy K. Clark | 10:33 AM ET | 08-30-2007

Hi Leroy and all,

Another important sharing ???on how we can pass on what we are learning from the experiences of having cancer, other deadly diseases, and caregiving for those who do.

There are many ways of sharing our stories, experiences and learnings with the others who will come after us ??? cancer/deadly disease surviors and all the others who don???t (yet) share directly in this experience as well. All, I believe, can learn from it, though in different ways, depending on who they are and their own experience.

We can (and do) benefit as well from sharing our stories and the lesions we have learned from them, as well as the health and other assets we discover and uncover as part of the process. Your own story, Leroy, as chronicled in this blog is evidence of this. So are the many stories it elicits from other cancer survivors and members of their communities that it elicits in response. The responses to yesterday???s blog are just one powerful example. Almost everyone provided another example of an important learning and great story that has come from their experience, however painful and ugly on all kinds of levels, with cancer.

In my own congregation, which serves as a primary, some of the most important and lasting stories are of people whose unavoidable experiences of dying continue to enhance our lives as a community. We remember one young woman whose heroic struggle with cancer inspired (and inspires) us all every time we see beautiful music stands given in her name at the front of the church. Each time we eat or sing together we remember a man who was a part of our heart and soul as he slowly died of HIV/AIDS while serving as one of our most active members. Our church garden, our Covenant and a recent book of poetry remind us of the lives and lessons of a couple whose lives and lessons quietly but powerfully influenced oir lives together for more than 60 years and, indeed, continue to do so.

On a broader scale, the memory books, prepared for their children by mothers dying of HIV/AIDS in Uganda elsewhere in Africa for their children and grandchildren and the AIDS quilt here in the US tell important stories and teach important lessons of their own.

Your NPR colleague Krista Tippett, underscores the importance of telling our stories and teaching their lesions by example in her interfaith program ???Speaking of Faith??? and her book of the same title. Dr. Jerome Groopman says in his book ???How Doctors Think??? that not listening to survivor stories can cause doctors to miss diagnoses. Perhaps more important, sharing and recording our stories is a means of preserving who we are and what we are learning for our children, grandchildren, comities, and friendship networks. For me at least, such efforts have been an important part of what is keeping me going. To that end I have been videotaping since the day of my surgery, keeping my responses to this blog in a journal and working on a book based on the reflections that this adventure has inspired. I am sure others are telling similar stories as the write their own response.

Recently I had the opportunity of visiting a major faith-based medical system that includes seven hospitals in Memphis. They are renovation 20,000 square feet as a ???Center of Excellence in Faith and Health??? and starting an interfaith congregational network that will be aligned with the system. I recommended that they include videoing and other story telling, preserving and recording facilities in both the Center and the Network to aid in both healing and curing. I plan to make the same recommendation to the American Cancer Society???s network of Hope Lodges as soon as the opportunity presents itself.

So yes, telling our stories and treating our journey with cancer as moments for teaching as well as learning is very important ??? not only for ourselves, but for others ??? from our immediate families and communities to the medical and healing communities as well.

Keep On Keeping On

John Shippee
Atlanta Georgia
johnshippee@hotmail.com

Sent by John Shippee | 10:39 AM ET | 08-30-2007

Hi Leroy--Like Kim and others, I keep trying unsuccessfully to get a copy of the "Living With Cancer" DVD.
I get frustrated when the Discovery Channel acknowledges the demand for the DVD, yet they aren't able to tell me when they will show it again. I was told that it wasn't for sale due to issues of "permission."
I keep hearing what a fabulous resource it is for cancer patients, their families, and care givers. I deeply wish that a resource that is so valuable is not more readily available to folks.
This show seems to have fostered many conversations--these are the beginning of lasting memories. I firmly believe that in the future, folks will look at this blog and the TV show as a format that dramatically increased the ability of folks without and with cancer to talk much more easily about actually "living" with cancer. What a wonderful legacy.
If anyone has any ideas how I might get a copy, I would be very happy to pay for any costs encountered.
Thanks so much,
Jean
jmangn@ties2.net

Sent by Jean | 10:59 AM ET | 08-30-2007

At times, I wish I had kept a journal of Burge's cancer journey but at the time, I just "didn't feel like writing it all down". Most of the time, I was able to keep appointments, events, lists of med's in my head. Now that it's all over, however, my mind is a blank. All seems to have gone white like a malfunctioning digital memory stick, and in a way, I don't think that is all bad.

For me, forgetting may be a temporary blessing...a chance to heal from the grief. Everything still feels like a bad movie, and thinking about everything I've lost, especially the love of my life, isn't a very positive thing.

I'm hoping that at some point, I can actually recall the moments of the last three years...both the good and the bad. Our story did not end well, and to tell all the horrible details may not give hope to those of you who read it. I know that we must all fact the realities of cancer, in our case, metastised colon cancer, but I'm not sure hearing some of it would be a positive venture for those who follow and in some chapters, there might have to be a rating system like PG, R, and XXX.

Your idea is great, Leroy, and I agree with those who have said you are already writing that book with this blog. I love this site and it continues to give me hope for each day, but cancer is still a gruesome disease, just as war is and I'm not sure everyone would appreciate the disenchantment of the details. I think had we known some of the things we would have had to face in advance, our choices may have been very different. I know I could not do what Burge did should I find myself in his position, but maybe that is what others need to know.

With love for all who travel the road,
Nikki

Sent by Nikki | 11:03 AM ET | 08-30-2007

I also watched the last part of Crazy, Sexy Cancer last night. Now I am sorry that I did not see the whole piece. I am still in the grieving caretaker mode and watching specials like "Crazy" and Leroy's "Living with Cancer" help me process what I lived along side my husband.
I wish that he had kept a diary or something. He started one about a month before he died but did not feel like writing much. While we did talk, I wish that I had something to go back to -- something to help me see, hear, and feel his side of the story again. The reason this blog is important to me is that it helps me remember things that I have forgot -- procedures, nurses, trips to the hospital, feelings, etc. And I do not mean this in an obsessive manner, either, just memories. Not all of them were bad or terrible. We always tried to make "moments" following our trips -- lunch at a special place, an ice cream treat,a stop at a favorite book store, that sort of thing.
My husband's life with cancer was a story and it was written about in our newspaper, but he never put pen to paper about his inner thoughts.
I get glimpses every time I read this blog -- sometimes I laugh and say, "Yeah, we thought that too and laughed at ourselves!" Sometimes I cry at my desk over what my husband experienced.
But one thing is for sure, I am forever changed. I really grew up...
Deborah in Asheville

Sent by Deborah Compton | 11:08 AM ET | 08-30-2007

Dear Leroy,
I am glad you have this blog as it gives me a chance to think about others in the same situations as myself--better or worse than me, and it is wonderful to hear the positive comments and the bad experiences as well. As for my journaling----no way. i used to write poetry....no more, I know how this disease has affected my Family...it has made them stronger and more compassionate, and very brave and loving to their parents; however, i know how they have suffered, how they worry with all the scans, bld work,discomfort, and crap that goes on with this enemy-----do i really want them to "read" about this stuff? NO ! They have gone through enough...and it's not over . I just want them to forget all the tough stuff and remember the Family dinners Mom prepared, the games we've played, the "up" phone calls, the silliness of grandparents. Life is tough enough without all those other memories----they won't forget, so why do i need to remind them. Leroy, your blog is all they need to hear it all,and i thank you for saying and doing what i can't and won't. Thank you, my dear dear Leroy. Take care---have a good holiday weekend---REST. xo dee

Sent by dee | 11:20 AM ET | 08-30-2007

I am really struck by your blog. Even though I don't have cancer and therefore do not have your experience, I feel like by having read your blog, I understand a whole lot better what you have been through and what my friend Beth went through. She died a week ago Sunday from breast cancer and I am feeling so sad.She did everything the doctors said and we all believed that she would beat it but after 11 1/2 years,it beat her. I wish the absolute best for you and thanks for sharing this blog with us.

Sent by Jean E. Hughes | 11:20 AM ET | 08-30-2007

Dear Leroy,
I think your blog says it all. Even though I'm a female Nurse Practitioner with a different cancer, I relate to everything you write about!
That said, I write my own blog to update and/or educate family and friends. I, too, feel there is so much that I have learned from having metastatic breast cancer and I try to share the valuable lessons that I have learned with others as well.
My carepage is www.carepages.com and my carepage name is jmarissa if you figure out a way for our hard earned knowledge not to be lost.

Thanks,
Janet

Sent by Janet | 11:21 AM ET | 08-30-2007

Dear Leroy,
I am glad you have this blog as it gives me a chance to think about others in the same situations as myself--better or worse than me, and it is wonderful to hear the positive comments and the bad experiences as well. As for my journaling----no way. i used to write poetry....no more, I know how this disease has affected my Family...it has made them stronger and more compassionate, and very brave and loving to their parents; however, i know how they have suffered, how they worry with all the scans, bld work,discomfort, and crap that goes on with this enemy-----do i really want them to "read" about this stuff? NO ! They have gone through enough...and it's not over . I just want them to forget all the tough stuff and remember the Family dinners Mom prepared, the games we've played, the "up" phone calls, the silliness of grandparents. Life is tough enough without all those other memories----they won't forget, so why do i need to remind them. Leroy, your blog is all they need to hear it all,and i thank you for saying and doing what i can't and won't. Thank you, my dear dear Leroy. Take care---have a good holiday weekend---REST. xo dee

Sent by dee | 11:22 AM ET | 08-30-2007

What you're saying is so important - leaving behind a history in some form or another. My father is 85 and a WWII survivor. My mom at 82 survived the depression. They belong to a group of senior professionals in St. Petersburg, FL and they did record their history on tape. All of us kids have it and will treasure it forever, especially when they are no longer with us. We must chronicle our lives for future generations. Whether good or bad, like cancer... Thank you for reminding us Leroy!

Sent by Carolyn Hall | 11:27 AM ET | 08-30-2007

On a more personal level I encourage everyone to "leave something behind" for your children and loved ones. Whether it be a letter, story of your life, and/or your recorded voice. At the age of 22-24 it never occurred to me that one day I would yearn to hear my Mom's voice again....

Sent by SA | 11:29 AM ET | 08-30-2007

Both Livestrong and the American Cancer Society have places on their web sites for people to share their cancer stories. I encourage all readers of the blog to share their stories and be available to mentor those newly diagnosed. Reach to Recovery does this for breast cancer patients but it is needed for all the others that are not so public. We can make a difference and already are.

Sent by Elizabeth Hendrix | 11:31 AM ET | 08-30-2007

Leroy,

I have to disagree with "unless you live it, it won't mean much." I don't have cancer - yet, but I have learned much from this blog that means a great deal to me. Lessons in courage, compassion, suffering, depression, relief - and much more. This isn't a cancer blog so much as it is a blog about life and the living of it. Without the sugar coating. It is a very wonderful thing you are doing. It means much to me.

Sent by Diana Kitch | 11:31 AM ET | 08-30-2007

Leroy~ I think its a great idea. But I do know this, there are patients who are too weak or tired to read a book. So if you do anything, put it in another format besides just reading material. Audio is great for those who just want to listen. Video is great too. I think you are on to something. Take care and God bless.

Sent by DiAnn | 11:39 AM ET | 08-30-2007

This blog has helped me enormously, mostly just by showing me I'm not alone. I've learned that there are many others in circumstances as bad as mine or even worse, who are thinking deeply about what it all means, articulate, courageous, caring towards others, and amazingly, still able to laugh.(It's also been valuable to me to learn that as heroic as they are, those same people get scared and sad and angry, too.)

Surely, leaving a record of our experiences with cancer could be a great help to others. It seems there is plenty of material here for a book. Just get a good editor, add some photos, and voila! But not everyone is a reader. So your idea of leaving an oral history is good, too.Hmmm...who would know how to go about doing that? Oh, wait, I know -- Leroy!

Sent by Doris | 11:42 AM ET | 08-30-2007

I have thought about this often. I am a nurse on a hematology oncology inpatient unit. I often feel deeply blessed to bear witness to the experiences, love, and lives of the patients and families who I encounter. I have learned so much about life, and time and pain and joy from these people. I believe that many of those faced with this battle and all it entails do need to talk about it. I also believe that there is a great deal to learn from the bits of wisdom and clarity that they have stumbled upon through their journey.

Sent by Ann | 12:59 PM ET | 08-30-2007

Leroy,
I watched "Crazy Sexy Cancer" last night also. I thought that it was great! Her story had a much happier ending...well- middle... than most others might have.
I think that YOU and your NPR podcast, your appearance in the documentary and this blog have given a voice to and put a face on young people with cancer. So many who feel alone with their cancer. (or with their loved ones cancer) You not only document the journey but the forum helps to validate the struggles of so many... To be human in the shadow of cancer, to work, laugh, cry, sing, paint, drink rum on the beach -just be normal and have cancer too.
The treatment and the medical aspect of cancer, repeatedly "cubby holes" you and the exhaustion of climbing out of the cubby over and over, often makes it easier to stay inside it at times... or just be the sick guy!
Life has to be lived -right to the end.

Sent by Deb | 1:02 PM ET | 08-30-2007

Dear Leroy,
I have kept a diary or a journal. I tried "journaling" but when I read what I had written it just sounded like whining to me. You are a wonderful writer, as are many others who comment here.
Now that I am older (67) I wish I had written a lot of things down and asked a lot more questions. I have an old pressed glass bowl that my grandmother always called "grandma's bowl". Not long ago I started wondering which grandma it had belonged to...and it is twenty years too late to ask. There are so many things I think about from the past and wonder if it is fact or fiction.
Thank you for letting us record some of our experience and thought here.
Charlotte in Temecula

Sent by Charlotte Kewish | 2:02 PM ET | 08-30-2007

There is Leroy and it is called Storycorps!! (http://www.storycorps.net/)

Surely you must have heard the clips on npr? Mobile Storycorps booths are now touring the country. One came close enough to my town so I was able to interview my 70+ year old mother ON HER BIRTHDAY (and coincidently it was my 1 year out anniversary. Wahoo!) It was the most amazing experience and now I have my mother???s voice forever.

Aren???t you in NYC? Because there is a booth in Grand Central Station and one in Lower Manhattan. If you cannot make it to a booth, Storycorps has a do-it-yourself recording kit. How cool is that?

I cannot say enough about how powerful an experience this was and I hope many can also have this opportunity.
Yours truly,
Vi

Introducing StoryBooths
Who? StoryCorps is a national oral history project to instruct and inspire people to record one another's stories in sound. We have built recording booths???two StoryBooths in New York, one in Milwaukee, and three Mobile StoryBooths in trailers that are traveling the country???to provide people with a welcoming space where they can record an interview with someone important to them. StoryCorps interviews are archived at the American Folklife Center at the Library of Congress, and excerpts are broadcast on NPR's Morning Edition each Friday.

Sent by Vi | 2:25 PM ET | 08-30-2007

I recently self published a book about my 9 year struggle with State IV colon cancer. I felt that it was a rather remarkable story, and I wanted to share it with other cancer survivors. I called the book Journey's Near The End: A Cancer Fighter's Journal.

Sent by Carl Volkmann | 2:39 PM ET | 08-30-2007

Leroy's Army: An Oral history of living with cancer.

This is very doable.

I'm in. Someone let me know. I think we owe this to each other and Leroy.

Sent by Brit | 2:45 PM ET | 08-30-2007

Al:

Please give us the website.

Bob A.

Sent by Bob A. | 2:49 PM ET | 08-30-2007

Leroy, So much is lost with the passing of our Veterans. I had my Father and Two Uncles in WWII, they are all gone, but I have written down many of their stories for my kids and theirs. This cancer thing is so destructive to your life, no one who hasn't lived it can understand. I try to keep a diary, but it gets depressing. You know what I mean. Maybe a project that many of us could participate in would have great healing value, I think. Stan

Sent by Stan Wozniak | 3:03 PM ET | 08-30-2007

Dear Leroy and others,

Please be forewarned, this comment is completely off topic for today. One of your kind readers in this Cancer World environment in which we live brought Insulin Potentation Therapy (IPT) to my attention two days ago. I have now done a fair amount of homework via the web on the subject. I even asked my chemo doctor about it during my clinical visit yesterday. If you have tried this technique and are willing to share your experience with me, I would love to hear from you.

Thank you,
Ed Steger
www.hncancer.blogspot.com
easteger@yahoo.com

Sent by Ed Steger | 3:16 PM ET | 08-30-2007

Leroy,
I have been reading for awhile. I too have colon cancer. I am a baby in the cancer world. I was diagnosed in Jan. Had surgery and just finishing my first round of chemo. I have for a couple years been following this blog http://rachelnorthlondon.blogspot.com/
Before I had cancer. She is a survivor of the bomb blast in London. She has just had a book published Out of The Tunnel. She story is remarkable but I was amazed at how PTSD fits cancer patients too. I don't know if there has been studies but the shock of having cancer is pretty strong. She writes a lot about not being alone and how reaching out is an important part of healing.
Anyways thanks for your posts. Have a great day tomorrow.

Sent by Allan | 3:17 PM ET | 08-30-2007

Hello, All!

We, too, watched "Crazy Sexy Cancer" last night and would recommend it.

One difference between this blog and the film, with its related blog, is that the audience is more diverse here. The second major difference is the smaller spectrum of experiential variety noted in the latter.

The researcher in me went right to the index of the future book looking for our specifics, i.e., diagnosis, age, etc. Given the spectrum of cancer types and the wide distribution of ages involved, it occurs to me that any legacy that we leave would need to be electronic -- wikipedia style.

And, as has been pointed out here already, not everyone has access to internet resources. So maybe what we need is an encyclopedia?? *blinks*

A number of great possibilities for titles have been posted here; it's a starting point?

Be well!

-dp

Sent by dp | 3:27 PM ET | 08-30-2007

Yes Leroy, we must leave a legacy about our experiences and you certainly have taken it Giant Steps forward with what you are documenting and encouraging all of us to contribute. However I have found with my family, (although we have no children and can only try to share with nephews & nieces).
I have found that the problem is trying to get the attention of the younger generation and have them realize that Hey, we actually LIVED these experiences! It doesn't seem real to them until they see these things in a Documentary or a Movie with a PG rating at least, or a book or TV show with a sexy name in the title.
I believe that it does not sink in as real until they reach our ages or at least have had their own share of trials & troubles.
For instance, my husband is one of those WWII Vets who ran down and enlisted in the Marines when he heard that Pearl Harbor had been attacked. He saw lots of action and stayed in until we had won both wars! I did not know him in those days and it has taken all these years to realize what he went through and how close I came to NOT having my wonderful husband of 59 yrs.
Your ideas are wonderful but why do we have to wait until they reach our stage of maturity before they will truly appreciate what we lived? How do we get the attention of our youth? How many of our boys today must die and be maimed before we realize what THEY are going through? Maybe we must make your story and our comments into a movie! But hey, let's not forget to make it "sexy"

Sent by J C Rakowski | 4:25 PM ET | 08-30-2007

This reminded me of the movie "MY LIFE" with Michael Keton.

Sent by Cindy | 4:32 PM ET | 08-30-2007

Hi, Leroy, I just discovered the field of Narrative Ethics as it pertains to the practice of bioethics and am feasting on the first of two books now. Some ethics folks have been collaborating on the idea since the 1980's that a person's narrative, their story -- including their telling of the medical event timeline, and the ways they perceive their medical challenges -- is very important to know before knowing how to talk meaningfully with them about the bioethics crossroads they may have reached, and looking at the variety of ways they may want to go in deciding their next options. I'm only a short way into the first book, but it is remarkably nourishing reading, and gives strength for the importance of human beings telling their own story, and listening with great care and discernment to the stories of others.

Sent by Sarah | 5:32 PM ET | 08-30-2007

Leroy - there is a program called Chemo Angels that allows you to support someone going through treatment (by sending cards/letters), or receive support if you are going through it yourself. It's one way to "pay it forward" and let someone know, that someone else whose been in their shoes, knows and cares what they are going through...and that they are not alone...

Sent by Beth | 6:49 PM ET | 08-30-2007

Dear Leroy, Your blog has permitted many of us to tell our stories and to listen to yours, and to each others' accounts of daily life with cancer. It reminds me of Steven Speilberg's project with Holocaust survivors. I'm not sure which is more important: telling or listening. In the best circumstances, they're integrated. I spend alot of my day listening (I'm a psychologist) and never cease to be astounded at my good fortune--participating, in a small way, in someone's inner life--inevitably I am broadened and deepened. Your blog opens a tiny window into your inner world; I resonate to your experience and in that way I feel less alone. That means a great deal to me.

Sent by Sally Jenkins | 7:54 PM ET | 08-30-2007

In the spirit of sharing:

To briana: Have you considered consulting a medical malpractice lawyer. Perhaps you need to have your records reviewed by someone who is not directly involved in providing care to you. I don't know your age or financial circumstances, but a medical malpractice lawyer might have medical professionals on retainer, often nurses, who could review your records and form an opinion about whether/where things went wrong. I know money is not your goal, but the review of your records from a legal standpoint might give you an idea where to go medically. Many malpractice lawyers will do an initial consult for little or no cost. You can get a referral through the local bar association. Also, if you are of a certain age, you might consult the area council on aging and see if they can refer you to a professional medical advocate, again, often nurses, who could assist you at a reasonable fee. Just a thought.

And to Lucy Lee: I am sure there are many of us who can relate to your issues. My radiation therapy has left me with chronic gastrointestinal difficulties, too. Just last week I had to decline going to the county fair with my grandchildren - a FAVORITE activity for us - because I knew there was no way I could eat the fair food and I didn't want to be at the fairgrounds in need and stuck looking for a porta-potty. I wish you the best.

Sent by tex | 8:56 PM ET | 08-30-2007

Leroy, this is such a powerful idea that its imperative that it go forward. In fact, its important enough to me that I will do whatever I can to make this happen. I think with our collective energy we could do something really amazing with this.

Please let me know when we can start.

Sent by L | 9:30 AM ET | 08-31-2007

I don't have cancer and I realize that there are things about it I will never understand. I have, however, had a lifelong fear of cancer and I am in my 60's. As a teenager I would lie in bed at night and repeat the warning signs and decide if I had any of them. Any little swollen gland or bump on my skin would keep me awake for hours. So for me, at least, I don't agree that for those who don't have cancer your blog "won't mean much". Strange as it may seem your honesty and down to earth description of your struggle has helped me face my own fears, not only of cancer, but of other things in life. Reading your writing is a part of my day that is very meaningful.

Sent by Karol | 9:49 AM ET | 08-31-2007

Hi Leroy,
I read your blog every chance I get. I was encouraged to wrie a journal. I did. I just pulled it out the other day, it's been 2 yrs. since dx of breast cancer stage 2a. I had it all as far as tx. I wrote during all of that. I took it out yesterday and read it,it was an inspiration to myself. I can't believe what a human spirit can survive.I pray for you my friend! I have a longtime co-worker fighting oral cancer for 15+yrs. She is at home now trying her damndest to slay the dragon going through chemo-radiation again in less than a year.I pray for her too! I sent her one of your blogs the one about getting up each day and pushing the boulder uphill again.You are not alone! My mother is a survivor 14 yrs., my Dad had oral cancer 25 yrs. ago and just had tx this past year for lung cancer. I have a family legacy of questionable genetics I pass to my 20 year old daughter I'd rather not!

Sent by Marina | 10:21 AM ET | 08-31-2007

I am so glad you brought this up because this is a topic that has become so important to me since my mom was diagnosed with stage IV breast cancer last year. As sad and hard as this time is for all of us, I feel like it is also a blessing. Most people don't get to say goodbye to loved ones because death comes suddenly and unexpectedly. I feel fortunate that my sense of time with my mother is so prominant. I cherish every adventure and experience I get with her.
I was cruising choosehope.com for a "Cancer Sucks" shirt and came across something remarkable. It is a book called "Mom, Share Your Life With Me". It has a question on every page and room for her to write. There are questions that I never thought to ask her, but are so fascinating. It starts with questions about family history then moves to when she was a little girl and through the years. I can't wait to find out if she had ever broken a bone when she was young or what sports she played in school. You would think I would know this by now, but growing up, I thought the world revolved around me. lol

Sent by Wende | 12:03 PM ET | 08-31-2007

Made me smile and cry a little bit. It's 14 years since my own diagnosis of breast cancer and my first wonders were whether I'd live to see my children get older. One's out of college and working and the other's still a student. We have a deep and special love for each other and I'm so grateful to still be here.

Thanks, and I wish you my best, Leroy!

Betsey

Sent by betsey kuzia | 2:49 PM ET | 08-31-2007

Blessed weekend to one and all -- go swimming or take a short drive in the countryside or read a good book or eat some raw wheat grass juice -- anything to have fun and live. Live in the moment one and all. Time for cancer tomorrow.
Thank you Leroy for bringing us together. DixieDeb in Asheville

Sent by Deborah Compton | 3:19 PM ET | 08-31-2007

Al...
We would like to have the website you mention.
Thank you!
Love to you Leroy....rest easy>

Sent by bethann | 9:50 PM ET | 09-01-2007

Leroy, there was one statement in your blog that I can totally relate to. "Unless you have lived it, you don't really know". I was my husband's caregiver for 15 months. He had colon cancer. I lost him on Dec. 2, 2006 after a valiant battle with this horrible disease. And you are right, you don't really know what it's like unless you have lived through it or loved someone that has lived and lost through it.

Sent by Cindy Tomey | 5:22 AM ET | 09-04-2007

Leroy,
I agree that telling our stories is valuable for the giver and the receiver. Mother Theresa used to say, "Just one," when confronted about the millions of needy people in India. So if we tell even one person our stories, it matters.
Next month "It's Not About the Hair: And Other Certainties of Life & Cancer" comes out. It's not just my story, but several people's stories. I think the combined wisdom of these stories (and the truth about my own mishaps) will, as you are doing, bring light to world.

Keep up the good work, my friend, you are in my prayers.

Sent by Debra Jarvis | 9:59 AM ET | 09-04-2007

LeRoy and friends,
Again, you touch a nerve with the idea to document our travels and tribulations. I think publishing the blog and comments is a great idea.
For myself, I am now two treatments away from the end of my chemo and struggling to transition from 'cancer patient' to 'living with cancer survivor'. I have been keeping a diary which helps me collect my thoughts, though I have not shared it with anyone.
Perhaps my family will read it some day.

But the need to talk about the situation is crucial for all of us, be it a diary or this blog. I just lost a family friend to colon cancer. He had not been in good health before the cancer, but he was undergoing the same therapy as I am receiving. Then he died of a stroke. Perhaps that was better for him in the long term. But I rarely spoke to him in person, so I don't really know what he was going through and how he felt emotionally. That doesn't seem right to me.

I thank everyone on this blog for their shared comments and experiences, as we really are an extended family and we need to hear from each other.

May you find peace and compassion in your everyday struggle.

Sent by Lou Loggi | 6:47 PM ET | 09-05-2007