I Wasn't Supposed to Be the Story...

I was supposed to have died last month. That's what the doctors told me six months ago when I was diagnosed with cancer for the second time. Now that was mostly my fault. I kept badgering the doctor for a prognosis. After all, when you get news like that, there's really only one question that everyone wants to ask. "How long?" Of course, no one really wants the answer.

So I've beaten their first prognosis, and now I'm working on the second one. I've learned a lot in these last six months. One of the real surprises is that the doctors really don't know what's going to happen. I am being treated at Johns Hopkins, one of the best hospitals in the world. I have some of the best doctors in the world. But even they don't know the answers to some of the most basic questions. Will chemo work? Would a different drug be more effective? What will happen next? What should I do? And of course, that original question just keeps coming back. How long? They really can't answer that one either. They have studies, and averages, and that's what they tell you. "A person with your disease, on average, will live this long..." But that has nothing to do with your individual case.

So you pretty much have to just blunder through all this. It's not easy. But cancer affects everyone. I don't know a single person who doesn't have a loved one, a family member, colleague, friend of a friend, who has cancer.

But for those of us directly affected, cancer opens up a whole new world. I like to call it a parallel universe. It looks like the regular world, but it's very, very different. It's populated by other patients with whom you share war stories. "What drugs are you on?" "How are your side effects?"

And there are the doctors and nurses who fight like hell to save patients when they know that they will lose virtually all of them.

And there are the loved ones, and no matter how hard you try, there's really no way to comfort them.

This is a new thing for me. I've been a journalist for more than 25 years. In covering more than a dozen wars, I've seen my share of death, but I never thought I'd be talking about my own. I wasn't supposed to be the story. But all that's changed. Now, a number of you have already heard part of my story on Morning Edition. But starting today, on this blog, and in a weekly podcast, we're going to be able to go much further.

I'm going to be talking about my experiences, and I hope that many of you will write in with your own stories, suggestions, complaints, or just send a note when you're feeling overwhelmed by all of this and just need to vent a little. I'm sure you'll all get tired of hearing just about me, so my goal is to turn this into a real dialogue. I hope you'll be back here tomorrow.

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GE Cheese. Also, you have to keep your immunity up to P.R. all over your body at the same time so that the cancer does not spread. I used Mangosteen Juice 7 — became a wholesale distributor for the juice. Will gladly give you all the info if you desire to help yourself live!

Sent by Bernard Soloway | 10:10 AM ET | 06-26-2006

I wanted to let you know about my mom's blog about her cancer. Connie Ore is a retired school teacher living in rural Nebraska. Her blog has been profoundly healing for her and her community. While no one would wish for cancer, through her blog, my mom's cancer has opened up her voice and shown her how much she is loved by a world she thought had forgotten her. I marvel at what I am witnessing and learning through my mother's blog. It has transformed and healed us in a way I didn't think possible.

Sent by Janna Nugent | 11:18 AM ET | 06-26-2006

It's great of you. Hope you get cured soon. Your will power is great. Bye, have a nice day.

Sent by Divya | 11:45 AM ET | 06-26-2006

I nursed my mother-in-law through lung cancer until the cancer won, and I nursed my husband through lung cancer until that cancer also won. If you don't mind, I will follow your experiences and see where they lead. Carry on, Mr. Sievers!

Sent by Patricia Gorka | 12:11 PM ET | 06-26-2006

In 1967, at fifty-three, my mom was diagnosed with breast cancer. There was a mastectomy and she passed the five-year cure time period. In 1987, she was diagnosed with colon cancer and died two years later. When I received her death certificate, the cause was listed as metastization from breast cancer. This shocked me because, after five years, we believed that she was cured. Later, somewhere I read that all cancer has an expiration date. That's odd, in a way, because life, in fact, has an expiration date. Its the living with awareness through the experience of whatever life brings that matters, I think. Thank you for sharing this. Know that you walk with many who walk silently with you. I hope you get hat eye exam.

Sent by Diane Valentine | 1:24 PM ET | 06-26-2006

Hope you're having a good day. You are absolutely spot on in your comments. I'm nine years away from a breast cancer diagnosis, and it does change you.

IMPORTANT POINTS:

-There's life BC and AC — before cancer and after cancer, and everybody is eventually going to step over the threshhold themselves or with a loved one.

-Doctors do their best with medicine, but ultimately it's all voodoo, because cancer is so unknown.

-I understand averages, but I want to explode very time I hear, "That can happen" from my oncologist. You want to know, "Why is it happening to me, and when will it stop?"

-I am very uncomfortable being called a "cancer survivor." People who walked out of the Nazi concentration camps are survivors. They got to the other side alive. Because there's no cancer cure and no absolute guarantee against recurrence, I'll need to die of something else to "survive" cancer.

-As for what to tell people inquiring "How are you?", there's a fun expression used at The Wellness Community where I volunteer.

Say "Im F.I.N.E." Only you need to know it stands for "Fouled* up, Insecure, Neurotic, and Evasive."

*Your choice of F-word, of course. Search Miss Manners for a great recent column re: How to talk with people who have cancer.

Sent by Mary Ellen | 1:37 PM ET | 06-26-2006

I am wondering about "cancer" as well. Two of my best friends, thirty-seven and thirty-five, died of cancer last year. It was the most difficult time in my life to be with them until the last time of their life. I meant to share with you "how they lived with grace." I want to continue to support you on how life is very beautiful. It doesn't matter what disease we have. I would like to give you the best courage to live life in a new height and great spirit. I am on your side.

Sent by Supalak Martliam | 1:56 PM ET | 06-26-2006

I listened to your essay this morning on my way to work. It brought tears to my eyes. I am a forty-five-year-old recent breast cancer survivor, and the mother of a three-year-old little girl, Ruby. By recent, I mean, I finished chemo in March and radiation in May 17th of this year. I, too, had trouble telling people the news, except for me, the news was good. That is "good" in cancer terms. "Stage one, grade one, clear margins, non-aggresive type tumor." So I found myself saying over and over again, "It is all good." Like you reassuring people that I was ok, because, well, I was. Your story made me grateful, that my cancer was "all good." I will put you in my prayers. It sounds so trite to say that I will put you in my prayers, but lots of people prayed for me and I think it helped. I have never felt so loved and cared for as when I was fighting my cancer. I hope you can still enjoy a good meal, laugh with friends and family and have many days in between your chemo treatments when you dont feel sick. God bless you.

Sent by Susan Stewart | 2:25 PM ET | 06-26-2006

Best of luck with everything. Sincerely. I have listened to two of your discussions about your cancer on NPR and I find them to be quite frank and honest, just like life. And you tell your story with a lot of courage. It's very informative and helpful for me to listen to. My mother-in-Law died from cancer in 1994 after being diagnoised with breast cancer seven years prior. Now my wife's stepmother has been diagnoised with breast cancer and is having a tough time with chemotherapy. Mainly becasue she also has Parkinson's and is on lots of medication. One more chemo treatment for her and she is thinking positive thoughts. We all are. We have to. We can't change the fact that she has cancer and we cannot give up on her or quit. That would be pointless, as you say in your broadcasts. Thank you for sharing your experience to the world — it's encouraging for me and other listeners, I'm sure. Remember Ray Charles sang "Let the good times roll. 'Cause when you're dead, you're done, So them roll".

Sent by Patrick Morgan | 3:12 PM ET | 06-26-2006

My husband has cancer. I'm the loved one who can't be comforted. Here's what does me in: my husband looking at himself in the mirror as he sets off to work, adjusting his tie, smoothing his hair a tiny wave he makes at hippopotamus as it floats by us at a Busch Gardens aquatic tank in Tampa on one of our walks. I'm a mess, but only when alone. What does comfort me is knowing that so many others walk this path, that this experience deepens my sense of the human experience. A terrible thing, this cancer, as it drags me to understanding the emotions of life. I see my husband's face when he walks through the door in the evening, and I'm glad that he is here with me. I have him for this single moment as it turns into another and another moment of time.

Sent by Julie Miller | 3:33 PM ET | 06-26-2006

Thank you so much for sharing your story with us. Please take care.

Sent by Lisa | 3:43 PM ET | 06-26-2006

My experience with cancer, so far, has been indirect, but nonetheless real.

My secretary of seventeen years had cancer of the liver. She battled it for nearly two years, but died in 1993. She was one of the best people I've known, and losing her affected me and my solo law practice greatly. I still miss her.

The other person in my life who had cancer survived, thank goodness. She is my former wife. Hers was a sarcoma in her left hip. She had surgery, radiation, and chemo (adriamycin & methotrexate). She has been in total remission for seventeen years.

Cancer impacted my marriage. It was not strong to begin with, and the stress of dealing with a life-threatening illness hastened its end.

Cancer is like a thief or murderer that comes into one's life. It directly affects the patient, but it also affects those who are part of the patients life as well. The folks like me have to be doubly strong, for the person with cancer, and for themselves. I had no support group. I had to be my own moral support. It was a lonely and discouraging time.

I'm so grateful that at least one of my "partners" made it, but cancer is still a thief and a murderer.

I'm glad to get this off my chest. Hope you beat the crap out your cancer. You are never alone in your battle!

Sent by Richard Vogel | 3:45 PM ET | 06-26-2006

One year ago, my sister was diagnosed with an inoperable brain tumor. We were told it was a very aggressive cancer and that she had three months to live. It is one year on and she is thriving. At her last MRI she was told that the tumor is now so small that you would have to know it is there to even spot it. She gets better and stronger every single day. Just goes to show you how good doctors are at seeing into the future!

Take one day at a time and don't let the doctors discourage you!

Sent by Joanne Billett | 3:57 PM ET | 06-26-2006

I'm new to this cancer thing — my urologist gave me the diagnosis of prostate cancer three weeks and three days ago. I have to say I did not feel the expected sucker punch to the solar plexis. In fact, I didn't feel much of anything — except a desire to get the thing OUT. That's still going to be a while: after studying all the options, and doing a pretty fair amount of networking, I've decided on a surgical solution, but now I have to wait for the process to run its course. What kind of a society have we become? We have to stand in line for everything, including treatment for life-threatening diseases. But that's not what I really wanted to say. It's just this: Thank you for having the courage to share your personal journey on a blog, and thank you for going on NPR too. I heard your comments as I was getting into my Monday morning, and you touched me in a way I would not have appreciated a month ago.

Sent by Fred Andersen | 4:29 PM ET | 06-26-2006

I wanted to thank you for the courage to speak about your life in this forum. As you were once on the other side of death and dying as a reporter, I find myself on the other side of illness. As a physician, I deal with the mundane and, at times, the heart-wrenching aspects of telling someone of a grave and potentially life ending illness. I find solace in the position of standing at the foot of the bed and not being in it, as well as, the love of my young family of three.

But there is a part of me that has to deal with the impending worsening health of my parents and in-laws. The eventual change in the health of my wife and myself. I'm quite frightened of it all.

I'll track your progress and maybe write again. For now, I thank you for your thought-provoking insights and hope that I can better help my own patients feel whatever comfort I can provide and in the end be a better person, and have a life that will one day be viewed by myself and those that I know and love as having been worthy.

Sent by John | 4:47 PM ET | 06-26-2006

Thank you very much for putting out this blog. I don't think there is enough of this kind of dialogue out there in the cancer world. I see a lot of bloggers talking about how great an influence cancer has been on their lives, but not too much of both sides.

My father and I have started a series of podcast interviews with the same goal in mind: to show all sides of a battle with cancer.

You are right when you say that everyone has been touched by cancer; I think we all have at some point. I was disappointed when my father was diagnosed at the lack of dialogue out there on the subject. I wish you all the best. I will most certainly be back here tomorrow.

Sent by Anderson Imes | 4:48 PM ET | 06-26-2006

I woke up to your voice this morning. I have just finished twelve chemo treatments for Hodgkins. I'm a journalist writing a book about my experience... It's weird being the story, as you say.

Thank you for sharing yours — there's much I can relate to. I, for example, struggled immensely with how to tell and who to tell about my disease.

I'm looking forward to getting my hair and eyelashes back. I dream about jogging, having my metaport removed. My doctor will let me know if the cancer comes back. I'm not going to worry about it.

Look forward to following your life. Be well.

Sent by Kris | 5:13 PM ET | 06-26-2006

Love it! I was diagnosed with melanoma on May 11, 2006, and have been living in the parallel universe ever since. I couldn't have expressed my thoughts any better than this column and I really look forward to reading it.

Sent by Stephanie DiPilla | 8:49 AM ET | 06-27-2006

I heard your story while I was driving to work today, and am very impressed with your determination to continue living your life. My dad did just that after being diagnosed with lung cancer at age 83. He continued to have coffee with friends, travel a little, work on the antelope research project for which hed done bi-weekly field counts for more than four years, read, vote, dream, and talk to his family and friend telling us how he was doing. He was a lifelong outdoors person and achieved his goal of "one last dove hunt" just two weeks before the cancer claimed him. I might add that it claimed him a year and a half after when his doctors predicted it would. My hat is off to you! You are living life, just like my Dad did right up to the very end. My thoughts are with you.

Sent by Ginger Floerchinger-Franks | 8:54 AM ET | 06-27-2006

Having heard about your story on KPLU this morning, I can't help but remember when I first heard the news that my father had lung cancer ten years ago, and then again six years ago when my brother tld me he had leukemia. It is one of those diseases that makes people feel uneasy, and not sure what to say when informed about it. For some reason though, nothing was as painful hearing news like that, as when I was informed last yrear that my mother has pancreatic cancer. It was as if someone had hit me in the head with sledge hammer. I think people have a hard time telling loved ones about their illnesses because they don't want to feel the pity that might come along with it, but on the other hand, you want people to know, so you have the inner feeling of not being alone in dealing with it.

My prayers are with you, and having this blog to respond to helps me in dealing with my moms cancer at this time. It is very unselfish of you to allow people to comment, vent, or just discuss how it is we as humans deal with this illness.

Sent by Glen Alcorn | 9:02 AM ET | 06-27-2006

I'm a thirty-two-year-old woman in my third year of "surviving" metastatic breast cancer. It's very rare that it strikes this hard, this early. As a matter of fact, it took six months to be diagnosed because my doctor thought it was so unlikely that a twenty-nine-year old woman would have breast cancer, even though I had a strong family history and practically every other "red flag" that in retrospect would make it more likely for it to occur.

I've never asked "why me," either, and I've done all that's been prescribed, proscribed, and a few things that are indicated but prohibited. Yes, we get by, we go on, and that parallel universe is there, but the fellow travelers can be few and infrequent in their ability to support. I've never been married and do not have children. I count this a blessing most days, in that I dont have those blessed relationships to guiltily drag through with me on this journey. However, I also don't have those relationships to assure me that I've made a real difference in the short time I will have been here.

That's the thing that keeps me going, and the thing that keeps me awake some nights. Will this disease make my existence trivial, or will it make me inspirational? It's a choice I make each day. I like to think that I make the right choice most days.

I'll keep following your story, although, I doubt I need to, as I live it with you. We've done some interesting things to celebrate my life that I'd like to share, if you are interested in hearing stories along that line. There was a large 30th birthday party in lieu of a wedding for me, tattoos of the breast cancer ribbon copied from one I have over my port-a-cath scar that several of my friends and family have (and other plan to get), and vacations that we have taken earlier rather than later. Those are the ways I've chosen to spend my time, in addition to working, which helps me feel like I'm still vital, productive, and gives me a chance to catch NPR.

Thank you for sharing. I wish you peace and strength.

Sent by Amy Carpenter | 9:47 AM ET | 06-27-2006

I am a mother of a child with brain cancer. He has been in and out of treatment for the past four years. He was diagnosed at age five, just as he was about to enter kindergarten. He is now nine, and we think he may have relapsed again and are in the middle of more tests and facing more treatment.

I can imagine that being told you have cancer and a limited time to live would be horrendous. I hope I never have to face that.

But, I would take on all the cancer in the world along with the nasty, painful, debilitating treatments and die a thousand deaths if I knew that would save my child's life.

This poem below was posted on the website of another child we know who also has brain cancer.

THE LITTLEST SOLDIERS

The medals on our chests

Are port-a-caths for meds

Helmets wont stay on

cause no hair is on our heads.

Our weapons of destruction

We take everyday

We fight the battle within us

While we struggle on to play.

We fight with honor and courage

No marine could do as well

We are only little children

Living in this hell.

So bring on the medals

The Purple Hearts of Wars

The Gold Cross, The Silver Star

To place upon our scars.

For we are the Children of Cancer

No one has fought so hard

But everyday we struggle on

Our life is our reward.

-Cheryl Jagannathan

Sent by Nan Lofas | 9:55 AM ET | 06-27-2006

I enjoyed your report on NPR this morning, and I read through the comments you've received. I, too, have cancer. I was diagnosed with ovarian cancer in August, 2000, and in the next two years found out that I have recurrent ovarian cancer. During this last bout I've received chemotherapy for over two years, and, at this point, although I feel well, we (me, my oncologist,and my husband) have some concerns about how my body will be able to hold up to more chemotherapy.

But, with all of that aside, I was interested in how you tell people about your cancer. I, too, have several versions of how I'm doing and give the appropriate version for the person I'm talking, too. And, I've noticed that the version I give is often what I think the other can handle or what I think will match their interest level.

I think it's hard for people to know what to say to me because often close friends won't say anything so that they don't "remind" me that I have cancer (like I ever forget). Then, other times the other person seems to only want to talk about my cancer, and I'm absolutely not in the mood for that discussion. Usually I dont know from day to day or from hour to hour what my mood about this will be.

Sometimes I feel like I spend a lot of precious energy with the communication about my disease. I'm not complaining about that, but I am glad that someone publicly talked about this part of living with cancer —communicating with others about your disease and how you feel physically and emotionally.

I think that we each have to decide how we can live with cancer, and that decision may be very different from person to person. Still hanging in there!

Sent by Dana Siler | 9:57 AM ET | 06-27-2006

As patients and survivors we make these points again and again — that cancer is happening to us, but that we will get through it, make the best of what we have, and see as many tomorrows as we can. A new lexicon of disease opens to us and we hear the same phrases over and over, and we have to develop our own routine of what to say and to whom. Bravo to keeping your head on straight and your eyes forward as you battle (ah, another phrase we use so often!) this disease. Your fellows are rooting for you.

Sent by Chris Wilkinson | 9:59 AM ET | 06-27-2006

I listened to your comments this morning while driving home with my seven-year-old son in the back seat. I am an internist, and was stunned two years ago to be diagnosed with NonHodgkins Lymphoma. Now I'm "retired", since this type of "CA" hasn't been cured. I still find myself comforting and reassuring my friends and family, since optimism is vital to staying sane. But, don't you just sometimes want to say "No, I'm not fine....I feel lousy and I'm scared!" I have. Not today, though... I'm fine.

Sent by Joan Geiger-Dow | 10:03 AM ET | 06-27-2006

My husband and I listened to your story as he drove me to work this morning. Your insights on how/when/if to tell others about your situation resonated strongly with us. My husband drives me to work so that I don't risk getting sick on the El — the subway is too ripe with germs for my weakened immune system.

I got married in December, went on my honeymoon in February and was diagnosed with Hodgkins in March. I'm halfway through the expected chemo treatments and I've not had too rocky a ride thus far. While this is obviously not the way I expected to spend the first year of my marriage, it has its benefits. The absolutely unmeasurable love and support I receive from this truly selfless man astounds and awes me. I know that I am truly, deeply and completely loved. Instead of thinking about how scared I am, and how sad our situation is, I try to think about how lucky I am to have felt this love so completely.

My thoughts are with you as you continue through this journey. You are not alone.

Sent by Marianne Congdon-Hohman | 10:07 AM ET | 06-27-2006

Your comments this morning hit home. My twenty-seven year old daughter was diagnosed with breast cancer on January 10, 2006. She is currently going through chemo. Everything you said about not being able to talk about it at first was true for me. I couldn't answer the phone for the first two months. My daughter has shown such strength and courage that I have followed her lead. She also is maintaining a blog.

I wish you and your family the courage and strength you will need in the coming months/years.

Sent by Marcia | 10:19 AM ET | 06-27-2006

Well, lucky you, with brave doctors and a topflight clinical bunch. I'm in over-crowded Las Vegas — the "caregivers" are so overloaded, an appointment is just five minutes of face time. Anyway, you're right — they don't know much. I've got severe constipation, and the first thing about it is that it isn't funny. Second thing is battling each "movement" with prescription or folk remedy. Then, hopefully, it's unload and wait for the next time, fearing that there won't be a next time and It's off to the hospital for tubes and such and an undignified end. Or maybe not — there's always traffic, catastophe, and the classic heart attack. So that's my rant — first time in public!

Sent by Richard Halliard | 10:28 AM ET | 06-27-2006

Thank you for sharing this — you still write like an angel.

Sent by Anne Silberman | 10:30 AM ET | 06-27-2006

I have a friend, Ben Bull, who was diagnosed with stage 4 colon cancer in 1999 and given a 5% chance of survival. As far as I know he has been cancer-free since his treatments. In addition to the traditional medical treatments, he had a Vitamin C IV drip. Just thought I'd pass it along. By the way, I really enjoyed/appreciated your work at Nightline. It felt like a friend had moved away when you left Nightline.

Sent by Mary Anne Doty | 10:45 AM ET | 06-27-2006

Jody Eldred here... part of the Nightline Emmy team on "Fox 2/5" from the Persian Gulf. Just heard your unfortunate news, and sorry to hear youre going through it, bud. Know I'll be praying for you — and God answers prayers in all kinds of ways. Some of them aren't answered on this side of heaven — I'll take that too. He cares deeply about you — that we know.

Stay in touch and keep fighting!

Sent by Jody Eldred | 10:51 AM ET | 06-27-2006

As a free-lance employee of Mickey, a loyal watcher of Nightline, plus a big fan of your email announcements on that night's upcoming nightline, I want to extend my prayers and best wishes to you and your entire family. I lost my best friend to cancer but I also have two friends who have survived it. Things happen in threes, my mom always says!

Good luck.

Sent by Gary Crawford | 10:54 AM ET | 06-27-2006

Listening to your commentary brought a rush of memories and tears on my own encounter of learning I had cancer. It's a story of how I lost my fear of flying.

I'm at Chicago OHare airport, evening rush hour, waiting for my plane to board back to Michigan. It's back in the days before cell phones and I call my doctor from a pay phone to get the results of a recent breast biopsy. "It's invasive ductal carcinoma," she says. My immediate response, "Am I going to die?" It's surreal, an out-of-body experience. I'm standing there in shock, hundreds of hurried passengers rushing by, no one to talk to as they announce my plane is boarding. I get settled in my plane seat, and for the first time in my life as I take off I have no fear of dying in a plane crash. I figure what can be worse than than getting hit with cancer? Give up control.

It's 11 years later and I'm fortunate after aggressive treatment to still be among the living. That day at O'Hare I confronted my mortality and realized I could not protect myself against random events. I've never been afraid of flying since!

Sent by Marcia Horan | 11:00 AM ET | 06-27-2006

I've missed your emails from Nightline — I really appreciated the personal way you looked at the topic of the evening and felt like I had, in a small way, come to know you. This is another opportunity to know you — thanks for sharing your wisdom, sense, and humor. There are lots of us out here admiring (and pulling for) you, I'm sure!

Sent by Patricia | 11:05 AM ET | 06-27-2006

Three years ago I started my rounds with chemotherapy and radiation and I remember thinking, "One of these days Ill look back and think... I remember when I had chemo." And praise God, I've reached that point. The worst part of this disease process is never knowing what the next checkup will bring having to live day to day with my own immortality realizing that I'm not invincible. I firmly believe that it's not the fact that I have cancer that is most important... it's how I handle that fact how I walk my own walk. And you know what? My walk has been a wonderful wonderful stroll these past 3 years, and I'm looking forward to many many more. I had a six-month CT scan last Friday... results to be read on Wednesday. All prayers are welcomed!

Thank you for your courage and spirit.

Sent by Sylvia | 11:07 AM ET | 06-27-2006

There are a lot of things I miss about the old Nightline, but one of the main ones is the daily reading of your comments. Even if I'd already seen the program or I wasn't interested in the topic, I'd read what you wrote. Not only was it intersting and educational, but it was obviously written by a real person who gave us glimpses into himself.

It doesn't surprise me, therefore, that you would provide us with this opportunity and privilege to share your journey with you.

Sent by Nancy Read | 11:09 AM ET | 06-27-2006

Sent by Angelica Hansen | 11:10 AM ET | 06-27-2006

I met you once in journalism class at USC. You were tan because you were living in Santa Monica and you showed us your stories from Uganda. I thought you were invincible because you had gone into a country where thousands were dying and you came out of it. I couldn't wait to ask you questions about your thoughts as you covered those stories.

Now I'm reading through your blogs, searching for something, like I was with my questions two years ago. Maybe I'm searching for the same thing you looked for as you covered the deaths of others. I think I'm trying to understand death. Or maybe I'm trying to at least understand the pure, deep sadness that flows from the thought of death.

Maybe not. Its just a thought.

Here's another thought: I hope you live forever. And even if you don't, I know you'll live a long time, because you had a long-lasting impact on the people you remember well, and those you barely remember.

So, please keep writing these blogs, because maybe one person, one day, will read one sentence that will stick with them forever. And maybe that person will go on to find what Im still searching for.

Sent by Ryan | 11:18 AM ET | 06-27-2006

I heard your story on the way to a University of California San Francisco to receive a second opinion for my husband who has been diagnosed with malignant melanoma. Your story put me on the even keel I needed to be present for him... and this comes on the heels of six weeks after completing chemotherapy for my own ovarian cancer. There have been days in the past month when I haven't known if I had the strength to deal with his (more serious, it's hard to believe) diagnosis, but each day, I plod on... It takes considerable courage to confront cancer head on, let alone share it publically. So thank you. This is what I needed to hear in the car on my way to UCSF for the second opinion. It made me stronger for my husband and it gives me the will to fight even stronger for my own prognosis.

Sent by Debra B. | 11:27 AM ET | 06-27-2006

Just wanted to let you know how improtant your Nightline production and emails updates were to me. You have made a valuable contribution to the culture. Always remember that. Wishing you sanity and wellness.

Sent by Stanley Weiser | 11:28 AM ET | 06-27-2006

I got the diagnosis in January 2004. More tests in February confirmed it, and sized the tumor as a stage three N something. March began my daily radiation and 24/7 chemo treatments, along with more testing, through April. May was the operation on my colon to remove what was left of the tumor. June was recovery at home, and July through January saw weekly chemo visits. 2004 was perhaps the worst year of my life. But here I am in June 2006, one of the 35% that beat colon cancer. To anyone reading this — if you haven't had your colonoscopy by age fifty, why not?!

Sent by Daniel Bateman | 11:29 AM ET | 06-27-2006

Watching my brother slowly deteriorate this past year with colo-rectal cancer has brought up grief I never thought I had in me. And sometimes, I cant tell if I am grieving his death or grieving how hard a life he has had and how awful for him to suffer so much this last year of his life.

Hes hung in there like a trooper, but lots of that for months has been in the hopes that he would pull through it. Sadly, he started out his diagnosis in stage 4 with hope for survival that I do not think the doctors gave him, but that he found somewhere deep within him — kind of a combination of hope and denial.

You see, my brother has been an alcoholic for most of his life so it isnt as if he wasn't already suffering a good deal, he was. When cancer came it presented a brand new challenge and he was not as fully equipped to tackle such a killer. Sadly, he was already suffering a kind of slow death on the alcohol, but that disease works so much slower and insidiously than cancer.

His oncologist has recently told us that we would see Rich deteriorate this next month after going on a morphine drip for the pain. His chemo stopped in the last six weeks after he ran out of options to fight the disease and, rather than continue the treatments and suffer the side effects for days afterward, he chose to stop them.

Now the family is attempting to have him give up his apartment and go live with a sister who is near him. He continues to talk about going out and earning money doing small jobs.

It's quite insane, actually, his head being in that space, and the rest of us trying to make his life easier and more comfortable as he weakens and gradually cannot take care of his needs.

His other disease stands in the way of his judgment and it does not allow him the opportunity to know what we all are going through, either. He can't get much beyond his own anger at the cancer, his guilt for some of the waste in his life, and his regret that he doesnt feel useful these days. It's all beyond sad. It's heart-breaking.

Sent by M. Gantz | 11:31 AM ET | 06-27-2006

It was sad to read that your cancer returned. I'm so sorry. I really, really enjoyed your posts on Nightline and still miss them. The other writers are good, but they don't have your humor and personality coming through. I am sending you all my best thoughts, hopes and wishes, Leroy. May you surprise all your doctors and get better. Wishing for your recovery.

Sent by Mary Iorio | 11:32 AM ET | 06-27-2006

I wanted to let you know about chronotherapy, a treatment for cancer I had never heard about, that is provided by medical doctors. About a week ago, I was watching a program about a woman who had both liver and pancreatic cancer. My ears and eyes perked up because my mother died from pancreatic cancer 26 years ago. The woman's tumors shrunk as a result of being on chronotherapy. Unfortunately, I did not hear the entire program so I cannot pass on too many details. But if you haven't already heard about this, I recommend you google "chronotherapy." There was also mention of the drug Adrucil.

I have also been listening to books on tape entitled Positive Energy by Dr. Judith Orloff. It might be helpful to you as well.

Sent by Caren Redish | 11:34 AM ET | 06-27-2006

I was an avid reader or your Nightline e-mails, and miss your writing. No one is currently writing for that program with your caliber of the "pen".

Missing your comments, I am subscribing to My Cancer. I was not aware of this developement for you, didn't understand why you left.

Wishing you many blessings, strength and joy as you discover this "new story".

Sent by Tara Linda Wortman | 12:57 PM ET | 06-27-2006

I don't usually post to "random" stories online, but I had my own version of "that day" in March of this year, and now I find myself part of the parallel universe community you mentioned. I'm thirty-eight, pancreatic cancer, stage IV, chemo and crossed fingers for more longevity. Simply a very serious game of waiting now. Waiting and trying just to live life as you mentioned, meeting loved ones, talking, sharing, grieving or denying —whatever the day calls for. Your story was very welcome this morning, thank you. I've set up a blog, too, if anyone who is dealing with this wants another perspective or would like to get in touch with a fellow traveler. Keep up the good fight.

Sent by Scott Swaner | 2:15 PM ET | 06-27-2006

I am a forty-two-year-old female just diagnosed in April with tumor and pleural effusion malignancy in lung. I have been told everything on how long I have to live, but God knows the big picture. I have a strong faith.

"Everyday, in everyway, I am getting better and better."

Thank you, thank you for your courage and initiative. I know I speak for lots of readers and listeners: please keep it coming, even through (and there will be some) agonizing moments when you wonder why in hell youre doing this?! Who's it for, anyway? I've been writing too, and these questions do crop up for me. I'm fourteen years out now, but every three months I have checks and I'm scared again. Thank you — you have friends who care. I, for one, will be there every day.

Sent by Betty | 2:21 PM ET | 06-27-2006

Thank you for sharing your story with us. Maybe I am unable to comfort you, but I will always focus on you —- a great man fighting with life! It is just the right suffering teaching us to cherish more for our lives.

Sent by Amity | 2:27 PM ET | 06-27-2006

I'm sixty-three years old and I have been living under this cloud for eight years. My prostate cancer is back and has spread outside the prostate.

It's now a different battle and to know that my life span is finite (as is everyone's) is sobering.

I, to,o enjoy my life and the thought of losing it piece by piece is depressing.

My mantra for these eight years has been "I'll be treated, I'll be cured and I will dance at my grandson's wedding". He is now ten years old and Im practicing the "two-step."

Sent by Bill Nakos | 2:29 PM ET | 06-27-2006

Thank you for addressing your cancer, for letting the public know that it does not have to be a death sentence or that "they" do not need to tip toe around the subject. I am reminded of this quote:

"In less than two hours, two of them told me that theyd had abortions. Three of them told me they were divorced. One hasn't talked to her mother in four years. And the one that has little Natalie in a boarding school because she has to travel for her job?

Hell, Patsy! Or, the one with the yeast disease that thought she had vaginal herpes? If that's fit conversation for lunch, what's so god-awful terrible about my little tumors?

Yeah, of course, but... what do you want me to do?

I want you to tell them it ain't so tragic! People do get better. Tell them its OK to talk about the cancer!"

-Terms of Endearment

After my own diagnosis, I would sense the pain others felt when they addressed me about my illness. I was not ashamed to discuss it, I couldnt understand what their problem was... but then I would remember the awkwardness I experienced talking to my own mother about her illness. I didn?t want to remind her of her deteriorating health or that she was leaving two young kids behind. I wanted to pretend everything was ok and have her believe me. However, she could not forget and everything wasn't ok. I wish now I had talked to her more, found out what it was that I would experience years later, at the same age she was.

After I lived through my own diagnosis and therapy, I knew talking about "the cancer" gave me a power over it. I wasnt scared or uncomfortable anymore. I wanted people to know that they could ask me questions, that they didn?t have to pretend that everything was "fine." I wanted to help them understand what people like me were going through, in case those people were afraid to speak up. Some of them understood and fed their inquisitiveness. Some of them remained scared or uncomfortable. Some couldn?t even come to see me when I was recovering from treatment because it brought them too much pain or fear. Their fear/anger/resentment/pain really angered me at first. But I have been on both sides of the fence so I can't deny that I understand their fear, their hesitation to speak up, comfort themselves and satisfy their curiosity.

I regret not having the courage or strength to speak up and ask questions when my mother was ill. I hope to remedy that guilt by being a source of information to the personality of cancer. Thank you for joining me.

Sent by Kim Slack | 2:47 PM ET | 06-27-2006

I had endometrial cancer (a very curable cancer) two years ago after surgery and a few radiation treatments I was fine. Now I just have to see my oncologist every three months for five years and if the c.a. does not return I will be pronounced cured. Really I' m writing for a friend who has stomach c.a. (not a very curable cancer). She is a physician and is also in her early '50s. I will tell her about this site. Good luck Mr. Sievers.

Sent by Mary Ellen Gaynor | 2:48 PM ET | 06-27-2006

I was diagnosed with rectal cancer last August. Hearing "it's positive" left me in shock. I was forty-eight with three children at home and no risk factors. I had ignored that little bleeding for several months. My gynecologist felt the mass and my cell phone suddenly had eight new doctors numbers on it. There were appointments, tests, chemo, radiation and surgery. My husband, children and I went forward. Treatment started, school started, neighbors and friends stepped in and took up the slack. Katrina hit our home state of Mississippi on my 49th birthday. Our lives took on a surreal aspect as we dealt with all the sudden blows we received in August 2005. I had my first clear colonoscopy in April, hopefully of many more. I dont blame anyone and I don't think why me. It happened, it changed all of us. People who know look at me and my family differently, sometimes with pity. What they dont understand is that I was blessed. Blessed to have the doctor find the cancer, blessed to have a husband and family who loved me, blessed to have friends and neighbors who did what they could to make it easier. I don't think I have ever felt as loved and cared about as I did during the treatment. If it comes back, it comes back. We'll deal with it as best we can. I intend to go on living until I die.

Sent by Chris | 8:57 AM ET | 06-28-2006

Ahhh, yes... the parallel universe. We, meaning young adults with cancer, call it Planet Cancer. This is from our website: "Like other planets, Planet Cancer rotates regularly between the dark side of night and the brightness of day. All too often, we lose ourselves on the dark side, forgetting that where there is night, day must follow and where there is life, there is the light of hope and laughter."

Of course, that doesn't get into the bizarre rituals, customs and language on Planet Cancer, but that's a much longer post!

For now, just know that there are many of us out here in that parallel universe, and that we are rooting for you, and for life, and for laughter. Even on those days when you laugh because its the only thing that keeps you from crying. :-)

Keep on keepin' on...

Sent by Heidi Adams | 7:35 AM ET | 06-30-2006

My father is in bed awaiting death from liver cancer. He decided several months ago not to have any more treatments. However, death is not cooperating as he had hoped, or in the time frame he had hoped for. So, he eats less and less, trying to have some control when there is none to be had. It is a game of chance and heartbreaking to see a strong-willed person trying to disappear while waiting for death and feeling forgotten by it. He has given up on life but cannot leave the party. We control our illusions alone.

Sent by P.L. Cocke | 10:48 AM ET | 07-04-2006

I thank you for your sharing about your experiences with cancer. I had surgery to remove a cancer in May. I have made an informed decision not to have treatment as my cancer is very rare and the drugs are not smart in that they would target the cancer [specifically]. They target whatever they target. A shot in the dark. I am 69, a widow, otherwise very healthy—no symtoms. My life goals have been met. I have decided to travel.

Sent by Simone Woodall | 12:38 PM ET | 07-07-2006

I want to thank you for your blog. Even though I have reached my second year anniversary for breast cancer, it is still a highly emotional topic for me. It is reassuring to find someone else who is willing to talk openly about their fears and help others better understand what goes through our minds.

I get so tired of hearing uninformed people say trite comments like "Don't worry, you're cured". or "Stop worrying... you look great and it won't come back". I've come to realize that they are comforting themselves and not me.

On a brighter note, this cancer has become a quiet teacher to me. I have learned to listen to my heart and follow my joy. Nothing is too ridiculous. If I want to take a certain class or dress a certain way... I'm going to do it. I try to laugh as much as possible during the day and enjoy the company of my family and friends. I am learning that other peoples' opinions matter much less as the days go by.

You are a brave and wonderful soul... thank you for your candor.

Sent by Mary Sebastiani | 9:43 AM ET | 07-11-2006



   
   
   
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Leroy Sievers

Leroy Sievers

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Leroy Sievers in the Ted Koppel Documentary

A Ted Koppel documentary focuses on his friend Leroy Sievers' "My Cancer" blog and the response it evokes.

 
 
 

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A journalist for more than 25 years, Leroy Sievers worked at CBS News, the Discovery Channel, and ABC News, where he was the executive producer of Nightline. He wrote this blog daily until his death in August.

 
 

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