I Am Not My Disease

 
“The cancer has changed just about everything. My life, my career, my body. But aside from that, I am still, at the core, the same person I was before. Maybe a little wiser, but the same person.”
 
 

Getting cancer turned out to be a good career move for me. That's a joke I've told a number of times, but it does have the ring of truth to it. Because of my disease, I have this blog, the podcasts, the commentaries. And I have a unique and valuable forum to talk to all of you. I wouldn't have this if I wasn't sick.

Writing these pieces every day is an interesting experience. I love to write and I think that I do have some things to say. Actually, I've been given the opportunity to say the things that so many cancer patients have been thinking all along. A privilege and a responsibility.

But it also forces me to face my cancer every day, to think about what it has done to my life. But I refuse to let that be my only identity. I'm more than my disease.

I've had a fairly successful career as a journalist. I had the privilege of working with some of the best in the business. I was able to see and do things that very few people ever get to see and do. Running Nightline was one of the highlights of my life. But just for fun, the other day I Googled myself. Oh c'mon, we've all done that, right? And so many of the entries now have to do with cancer.

And I have probably gotten a greater response to the My Cancer project than just about anything else I have done as a journalist. I've heard from old friends with whom I had lost touch — some, for decades. I have heard from current friends. And I have heard from strangers, from all of you, whose lives have so much in common with mine.

I think I've said before that when I had cancer the first time, when I had my surgery and pretty much thought I was cured, I never liked to use the term "survivor." That wasn't who I was. I wasn't going to let the cancer take over my identity. I was too busy for that. I was doing too many things.

But now, in spite of my best efforts, I may have lost that fight. In the end, I may very well be best remembered as a cancer victim. That's strange to me. I don't think I like it very much. The cancer has changed just about everything. My life, my career, my body. But aside from that, I am still, at the core, the same person I was before. Maybe a little wiser, but the same person.

And so I guess this is the time to say something that I sometimes feel like shouting out loud. I hope I speak for all of you out there who have this disease when I say, "I am not my disease." We, all of us, are much much more than that.

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Amen!! We are not our disease. We are Survivors!

I'm loving the fact that you are sharing this experience with the world —- and sharing it where it "is"! It really does help all of us.

My own colon cancer experience and survival ("Good for you!" they say — as if I did it) has made some sort of "hero" of me here in Denver — not exactly the way I would have chosen to become a "hero" but, nonetheless, I accept!

The "career move" concept is an interesting one. I, too, have experienced an enhanced "career"/business since my diagnosis almost four years ago. After my arduous chemo treatment and, as I started feeling better, I realized that I needed and wanted to get back to my real work. That work is primarily in support of and in creating valuable venues for women. Ironically, the colonoscopy that "uncovered" my tumor was found on Women's Equality Day (August 26, 2002)!

Before that turning point in my life, I had fervently and almost ineffectively worked to do "something" for women, but I really had nothing to "say" that would attract them. Before that scary diagnosis, I didn't have that clear message that would serve to bring them to the "table".

Now I, obviously, do.

Advocating "Know Thy Plumbing"!! "Constipation Kills" "Your Personal Value Compromises Only Hurt YOU!, are just some of the preventative and provocative statements I make. These hard-to-ignore, taboo-breaking headlines, are heard. And today I now have a great, full-length story that gets and keeps their attention.

I have yet another thought for you (and for other Survivors reading this blog): the Lance Armstrong Foundation is hosting a Cancer Survivorship Research Conference in DC the month of October. I am passionate about this survivorship issue (and all the mryiad of survivor issues!), and I'd like to contribute and learn more from the ongoing research. But I do think you also have so much to contribute to these folks (and us), and I would hope that somehow the LAF and you would find each other for further work.

We are, as you know, all Survivors!!

Please continue to pour your heart out on your blog. It gives us all "heart"!

Sent by Erika Hanson Brown | 9:32 AM ET | 07-12-2006

I just happened upon your blog two days ago, and it has been fascinating, and reflective, reading. I applaud your courage, your insights, and your sense of humor in all of this. I have recommended this site to a friend of mine whose sister is battling cancer. My family's thoughts and prayers are with you and your family.

Sent by Bill Combs | 9:38 AM ET | 07-12-2006

My wife has been diagnosed with breast cancer twice in the last three years. Her last chemo treatment was March 17th, 2005. Tomorrow, Wednesday July 12th, she goes to the City of Hope National Medical Center in Duarte, California for a hastily scheduled out-patient surgery to remove a lump from her chest which was not detectable just one week ago. I say chest because she has already lost both breasts to cancer.

I've heard My Cancer essays on the radio in the past and today I downloaded all that are available to my PC. I read many of the other essays this afternoon. The frankness and honesty of the essays have always been appreciated but today the words are especially heart-felt.

As I think about the possible outcomes from the pathology report (which I hope will be available by Friday) I begin to experience many of the feelings both patients and spouses must endure - fear, anxiety, denial, hope, faith. I try to avoid thinking the worse, but the worse always lingers deep in my mind.

I'll be positive and upbeat with my wife the next few days as we wait for

the results. The waiting is always the hardest part. Fear of the unknown cannot be rationalized.

Sent by Mike Kessler | 9:44 AM ET | 07-12-2006

I am a 52-year-old who has had melanoma twice. First time was a mole on my shoulder blade in 1987. Second time was internally, in only one (thank God) lymph node in my armpit. Second time was 1992. I took part in a 5-year melanoma vaccine trial program out of NYU. I have not — knock on wood — had more visits from melanoma.

The second time knocked me right out, and I was forced to take a whole new look at me, my life, etc. I was alternately in pain, frightened, angry, sorrowful, you name it. I became a sponge for new information about my cancer and how to cope. What I discovered is that quite a few other people had opinions on how I should deal with my situation. That is, advice on how to think about it ("stay positive!") how to feel about it ("feel grateful that its not worse have you heard about So-and-so?") behave ("let a smile be your umbrella") do ("change your diet- ("go macrobiotic/vegetarian") And lots of judgements (unspoken implications that I gave myself cancer) Unbelievable!

The main point that I would like to make for anyone reading this, who is either the person with cancer or who is the family member/partner of someone with cancer, is that there is no one right or wrong way to handle the situation you are facing right now. Beware anyone who tells you your attitude sucks, or youre on the wrong track with whatever you are doing or thinking or feeling.

It is your life, and your reactions are valid, period. Validate your thoughts and feelings, even when they are extremely scarey to you.

I met all sorts of people with cancer diagnoses and each one had his/her own way of dealing with it. Those who did everything "right" didnt necessarily live any longer than those who didnt.

[of course, I'm not encouraging anyone to be grossly irresponsible, you understand] Likewise, those who handled it "wrong" didnt necessarily die sooner. Some people I knew died some people I knew from those days are still alive (unfortunately, not anyone I knew who had melanoma with me, are still alive did I do anything differently/ "better"? I don't think so... Im still the same pill I always have been ask my husband and kids)

One thing I've always felt: though I truly wouldn't wish my experience on my worst enemy, I became grateful for the experiences I had because of having had that cancer. If/when I have a recurrance, I would/will be incredibly pissed off. However, I would have some tools that are sometimes too dusty, to pick up and use to face the future, which might include dying. Those are important tools I wouldn't have gotten hold of any other way than going through a life-threatening illness way.

Good luck to all.

Sent by Ginny DeHaan | 9:53 AM ET | 07-12-2006

Hello Leroy,

I am here on the Big Island of HI, 19 miles outside of Hilo on the east side where I am here with my younger brother Ian to treat his rectal cancer at www.angelfarms.com and I'm currently writing from a local internet cafe. Perhaps you should think of going to this clinic. What do you have to lose? The first person that Cindy worked on had colon cancer throughout and 6 mo. later, with doing her program and change of diet, etc. was completely free and is still around now... And it's beautiful, just beautiful here, to boot. Also, please check out www.waiora.com for Natural Cellular Defense. Has a patent that it kills epithelial cancer cells. It's worth looking into.

—Patty (and I like your ongoing series, just sent through Ross B and Jim H. Don't have your email though with Yahoo Beta when I went to check mail.)

Sent by Patty Gill | 12:50 PM ET | 07-12-2006

"How ARE you?", "I'm good", "Well, you LOOK good", "Yeah, I'm good," "I'm SO glad you are doing good," "Yeah, I'm glad I'm good too," "Well, that is so good!," "Yep, it's good." That is a conversation I've had over and over again this last year with well-meaning people that refer to me in conversation with others as "My friend Missy (pause), the one who had cancer." It is interesting that when they talk to me they accentuate the POSITIVE, and when they refer to me with others they accentuate the NEGATIVE. I can't figure out if it is human nature, good manners, powerful denial, or ignorance to not really talk about what you ARE talking about with the person you are talking to, and then turn around and talk only and specifically about their cancer and treatment and prognosis when conversing with others.

Well, before I was diagnosed, I had a friend who would always refer to another friend as my friend "so and so" the one with cancer as if that were her last name. And it really started to bother me after about the 4th time. I already knew who her friend was and I knew she had cancer so why the label EVERY TIME?? Well, once people know that about you, they can't not know it. What they choose to do with the information is their thing. Again, what and how someone chooses to talk about you and your sorrowful situation as they see it, is all about them and really not about you at all. I know why I make other people and there "life situations" the topic of my conversations, because then I don't have to look at or talk about me and my life. Yes, guilty as charged. However, I've learned my lessons the hard way. When my humanity, humility and empathy are in working order, I have no need to label others. I am so blessed to have some understanding about personal tragedy. When my friend's young son died unexpectedly early this year, I didn't rely on the standard and trite phrases meant to comfort someone in a place that is so uncomfortable there are NO words. I got to hug her, hold her, let her talk, let her tears stain my shirt and tell her without pause or fear how much I love her. How tremendous is that?

Sent by Missy | 4:20 PM ET | 07-12-2006

I see that everyone else is sending in their long, sad cancer stories. People do that at our blog, too (I write about my son's cancer). I like to think it means I've touched something true. These comments prove that, and I'll add my voice to the amens.

Sent by Sarah Bickle | 8:56 AM ET | 07-13-2006

I haven't written for a while but feel the need to respond to today's blog. As I wrote earlier, checking out "My Cancer" has become a part of my morning routine. Except for Saturdays and Sundays, of course. This past Saturday I thought to myself, "No blog today." And I felt a sense of relief. "Today I don't need to face it." And then I thought of you, thought that you, too, must be glad for two days respite of a sort. Of course, one never really escapes the fact of ones cancer. And, yet, it's not an identity. By no means does it define you.

In the few short weeks that you have been sharing your experiences, your thoughts, your feelings so simply yet so eloquently, you have become someone I care about. One can read a book of fiction, and if its well crafted, then the characters almost become living, breathing creatures. But they're not, even though one often suspects that theyre based on the authors experience. But of course you are living and breathing, and it hurts to read that you fear you may have lost your fight. I pray that isn't so. I pray that one day I'll check my computer and read that you've beat your cancer again - and this time permanently - and are discontinuing your blogs. Although they mean a lot to me, I would be happy never to read another one, knowing that you were well and out pursuing new interests. You are right - you are definitely not your disease - you are so much more than that!

Sent by Shosh | 1:57 PM ET | 07-13-2006

I am the wife of a wonderful man who has stage IV lung cancer. He was diagnosed only a month and a half after we were married in 2003 and had a lung removed almost three months after we walked down the aisle. During the diagnosis period, we kept hoping for a bit of good news and it just kept spiraling towards cancer. In the end, it was and of course he didn't lose just one lobe, but the whole thing. Finally, after surgery, we did have some good news - they thought "they got it all" and it was stage II. After almost two years of listening to that quarterly call from his oncologist following his CT (she always called me) and dissecting her voice as she spoke the first few syllables, straining to interpret what the news was from "Hi, Anne," the news turned bad again. A "spot" was found that has proven to be resistent to every therapy weve tried, and we've tried lots — chemo, biologicals, and more surgery. We're beginning to think that cancer treatment is just one big educated guess, at least for lung cancer. But Les has continued to work through all of it, set sales records, accomplished all kinds of home projects like building new corrals, remodeling, "mucking" our few acres in the mountains and so much more. He's amazing. However, the cancer is progessing and no matter how much I do or try or coordinate, it's been relentless like a glacier. I can't fix it, I can't hold it back and it feels sometimes like its rolling over both of us physically and emotionally. God has been present in so very many ways during this trial, but the one thing we want — a cure — just hasn't happened. I'm scared I'm going to lose him. My best friend, my husband.

Sent by Anne Palmer | 1:57 PM ET | 07-13-2006

I am glad you are writing and I'm glad I found your articles, Leroy.

I can't believe it's been almost three years since I was diagnosed with cervical cancer. Obviously I survived, and thankfully, it was caught early. It, at times, seems like it never happened. I would say that I was never treated differently or more kindly when I went through treatment. It was always hush-hush. If I actually stated to my boss WHY I needed to take a few days off for treatment, hed get perturbed I actually had the nerve to state the procedures name or title, as if it were too rude of me to impose the idea on him (he had to think about it). Saying I'd be gone was fine by him. My Mom just said, "well you never did want to have kids anyway". Thanks, Mom. It has not been brought up since.

I am thankful though that I did have the experience, as it changed my life. It caused me to re-think a dead end career choice and make a drastic move to a little town in the midwest from Los Angeles and apply to MFA programs. I got in finally and have just finished my 1ast year. It's hard to believe something I should have done ten years ago is finally happening — becoming a full-time teacher and fine artist at 36. I was never defined by my disease, but somehow its existence in my body, changed who I am and gave me new creative vision. I am not the same person who had given up hopes on her dreams long ago.

Oddly enough, I also remember thinking that it was easier to be the one to have it, than to be the loved one watching someone go through it. My father had the most emotional reaction that surprised me. It crushed him, and that in turn, crushed me emotionally. On the brighter side, it made me realize that it COULD be much worse. I felt like there were so many other aweful things that could have happened to me. At least there was the the hope of the treatment.

I just wanted to tell you that coming back again and again to your blog is very meaningful to me and I thank you for reminding me of why I am where I am today. It makes me more humble and thankful on my bratty days when I take things for granted or complain about insignificant things.

Sent by Jane Shar | 2:02 PM ET | 07-13-2006

Dear Leroy — I have been tempted to write so many times after reading your daily blog — and I cannot thank you enough, for being able to put so eloquently into words what so many of us are thinking and feeling — but today i just had to do it. My cancer experience (dx = Stage 1 breast CA in December 1998) has changed my career path, too. At the time of my diagnosis I was a lawyer working in a hospital — which I still am...but the hospital, and my attachment to the hospital and its mission, has changed as a result of my cancer and related experiences. I am now working at MD Anderson Cancer Center in Houston (my husband was offered a great job in Houston 5 1/2 years ago — I desperately did not want to leave PA to move to TX — but I said i would be willing to do so ONLY IF i could get a job at MD Anderson — which I was lucky enough to be able to do). Prior to my diagnosis, I hadnt even heard of MD Anderson, and even if I had, I would have considered it just another possible place of employment. But now, I am so committed to its mission — "making cancer history" — that I truly can't imagine working anywhere else. I feel compelled to try, in my own limited and attenuated way, to "give something back" in return for all that was — and still is — given to me in my cancer journey (which, as all of us "survivors" know, never ends...the paths we take may just change direction from time to time). And even my "free time"/volunteer activities have changed, to focus more on advocacy around survivor issues (I even started a "support group" for MD Anderson employees who have had cancer and/or are going through treatment since being a cancer patient/survivor and working at a cancer hospital presents some unique challenges and opportunities). Many of us look for some kind of "meaning" in our cancer experiences (along the lines of trying to figure out "why bad things happen to good people," etc., etc.), and the fact that I have found employment at a cancer hospital is what enables me to find meaning in my own experience.

Thanks again for being willing to share your journey with us.

Sent by Suzanne Mitchell | 5:10 PM ET | 07-13-2006

Hello. I was touched after read your blog from NPR.org. I was surprised that somebody can face his cancer so bravely. Everybody is afraid of death. But you are the exceptional. You choose to write down your mood in your blog and show it to everyone around the world every day. I think that you will be happier to face the disease with optimism. Don't give up. I hope you may live well among us for more months.

Sent by Kelly Lin | 9:14 AM ET | 07-19-2006

It's real tough not letting the cancer define you, not letting it consume your identity. I used to struggle with that so much during the course of my treatment. And like you, I also struggled mightily with the loss of control that accompanies your diagnosis. Suddenly, everyone else wants to make decisions about your life. Despite their good intentions, they don't understand that when you are eye to eye with your possible mortality, YOU need to be the one in control, YOU need to be the one making the decisions. Be strong, keep writing, and I'll pray for you.

Sent by Greg Stolcis | 3:10 PM ET | 07-19-2006

My cancer was my husband's. He died in 1993 at age 48. There were no blogs then, there was really no one to talk to - oh yes, Hospice sent a young man who knew nothing. My Scott even ordered Hospice out of the house and I'd never recommend them to anyone. I know they do good work - but not for Scott, and many like him I'll bet. His story - spent his entire life working for GE Aircraft engines, never took a day off for illness in 25 years. GE sent him to the first Gulf War as a Tec Rep on GE aircraft engines. I sent off a healthy man who ran every day and whose greatest vice was a couple beers at night. He came back sick, no energy, stomach upsets. They sent him to work at Sikorsky in Connecticut. I went to visit. After 2 weeks of doing the tourist thing he said "I cant eat another bite" - and that was the last time he ever ate anything. I went home the next day with a promise that his landlady - the aunt of a close friend of mine in SC who worked as the comptroller of a large hospital would get him a checkup. That was the 8th of July 1993. The doctor called me on the last Tuesday of the month ad said "YOU need to get up here, he's not going to be able to handle the news I have for him." He was in Stratford's St. Vincent Hospital - they didn't tell him anything, but put him in the Oncology ward. Scott was an engineer, but even he knew that Oncology meant cancer. Well 3 and a 1/2 months later he was dead. You wanna hear the rest? I'll tell you as abbreviated as possible. It's not a pretty story; it's about no faith, no honor, no heroism, nothing.

Julie Finlayson

Sent by Julie Finlayson | 6:08 PM ET | 07-19-2006



   
   
   
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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.

 
 
 

About 'My Cancer'

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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