That Little Nagging Question

 
“Whether you're one of only a handful with a rare disease, or one of thousands, it just doesn't matter. What matters is that it's happening to you. To your family. Your loved one. There is no solace in numbers.”
 
 

The following essay is from the NPR My Cancer weekly podcast:

"Relatively painless." "Almost casualty free." "Almost bloodless." Those are some of the phrases that have been used to describe recent military actions: Grenada, for those of you old enough to remember, where only a handful of soldiers died; same in Panama. Even in Desert Storm, the first Gulf War, the number of casualties was relatively small, compared with other wars.

And while those pronouncements were meant to be reassuring to the rest of us, I can't imagine how painful they must have been — must still be — for the families and friends of those who died. For them, it wasn't "relatively painless."

Instead, they must wonder why their loved one had to die. Why was the person they cared about one of those few? I don't know if it would ease their pain if more had been killed. I doubt it, but that sense that only a few had to pay the price still sort of haunts me.

What about the casualties of the war on cancer? It seems that virtually everyone is touched by cancer in some way. A friend, a loved one, a colleague. It seems like an epidemic. Hundreds of people have written in to the My Cancer blog, and most of the notes begin the same way: " I was diagnosed with cancer..."

Colon cancer, which is what I have, is the second leading cause of cancer deaths in the U.S. I have to admit, I was surprised when I read that colon cancer kills about 50,000 people a year — out of a population of almost 300 million. I expected the number to be much higher. That's a little higher than the number of people killed on this country's highways each year.

Now, God knows I wish the number of deaths was zero. But I thought about that number, and I thought, "Why me? Why can't I be one of the 229,950,000 people who don't die from colon cancer that year?"

There's no answer to that question, of course. Anymore than there is to the question of why one particular person may get up, get dressed and head to work, only to die in a traffic accident.

In the end, I guess, it doesn't matter. Whether you're one of only a handful with a rare disease, or one of thousands, it just doesn't matter. What matters is that it's happening to you. To your family. Your loved one. There is no solace in numbers. Multiply it out and hundreds of thousands are feeling the pain and grief of those 50,000 deaths.

But I have to admit that way back in my mind, selfishly, that little question still nags me every now and then: Why me?

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Dear Leroy,

I think about and your loved ones and friends often. I am a cancer survivor, in that it was my husband who fought the battle. He lost the war to a gliablastome brain tumor in 1996. Your accounts of the rounds of chemo remind me of one visit to University of Penn hospital. As I sat silently waiting for the nurse to administer to my husband, a young man 17-19 came in with a man in his 40s and another in is late 60s. It turned out the young man was there for his treatment. The grandfather was trying to console his son and the father was trying to be brave for his son. I am sure the question of why us was also going thru the minds of this family too. There is no answer, it is the just the lottery of life. I pray that since we were marked by this disease once we will be saved a second strike but I am sure it doesn't work that way. Thank you for putting your thoughts out there for us. My daughter who was 18 when her father passed away listens and reads NPR daily and I am sure your thoughts give her insight to her dad's treatment. Thanks.

Sent by Dee Robinson | 10:40 AM ET | 08-28-2006

Dear Mr. Sievers,

Your thought provoking article reflects what we all need to keep in mind: life is precious and we should live every day as if it were our last, because someday it will be. May God always be with you.

Sent by Les Lindsey | 10:42 AM ET | 08-28-2006

This again rings true for me. I have written to you before (and no doubt will again) to express my gratitude. You are putting into clear words and sentences what is so hideously "unfair" about cancer and what it is doing to families/friends/individuals across political, economic, diversity lines. I wish you well every day.

Sent by Jennifer | 10:43 AM ET | 08-28-2006

When my mother was dying of cancer and our family was struggling with grief, I drew strength, oddly, from asking myself, "Why NOT us? Why NOT her?" We always think that statistics only apply to other people. But sometimes they mean us. I found comfort in this, feeling that my family was not alone.

I have a friend who lost her mother when she was young. I'd always thought of my friend as one of those people that devastating loss and grief happen to... they didn't happen to me. And then I lost my mother too. Suddenly I was one of those people.

I have another friend whose mother is battling a recurrence of cancer. This friend talks confidently about how her mother will triumph over this bout as she came thru a previous one. I look at my friend and think, "You may believe that you are not one of those people, but someday you will be, and you will marvel at your former naivete." But I can't tell her. She won't understand until she goes through grief herself and becomes one of us.

Every blood member of my mother's family, going back at least three generations, has had some form of cancer so there's a very strong chance (statistically speaking) I will face it myself. Maybe this predisposes me to feel that statistics are us. The real challenge will be if I can still ask "Why NOT me?" if I am diagnosed myself with cancer. Ay, there's the rub.

Sent by Liz Sinclair | 11:01 AM ET | 08-28-2006

Hello Leroy,

This is the second time I write comments to you. As an old Chinese saying goes, "Take things as they come." What you can do right now is try every possible treatment available to fight against your cancer, to be optimistic about what has happened to you as well which is very important to person suffered from a rare disease. Living a normal, happy life like a normal person is good for you to treat your disease. I wish you make progress every day!

Sent by Zhang Yan | 11:22 AM ET | 08-28-2006

I can understand your feelings, but I have to admit that I never asked that question. I thought "why not me?" As nurses, we sometimes feel like were the ones who will be healthy... after all, we're the caregivers. But when I was diagnosed, after processing the shock and grief, I never felt that it was my job to find the answer to that question. My job was to do the best that I could with the knowledge that I had and the team of doctors, therapists, and other caregivers that I drew to myself to have the best outcome that I could.

I liked the idea from one of your other entries about the woman who was uninterested in the results of studies... the statistics about her chances for recovery. She said "I'm a study of one." I am too. I know that it's tempting to ask "Why me?" but if you ever come up with an answer, it's likely to be wrong. On a larger scale, we never know the ramifications of different events... how could you know in advance that you writing this blog about your cancer could affect in a postive way the lives of so many. Is that the reason "Why you?" If not, it's a darned good start. Be well.

Sent by Nancy K. Clark | 11:32 AM ET | 08-28-2006

Six years ago I went to a severe depression. I had to quit my job and basically I couldn't function at all. Then depression brought paranoia and I became more ill and desperate. After one year, my sister was diagnosed with MS and we all became terrified. I couldn't understand it. Why this things are happening and why to me and my family members? Then my other sister lost her baby when she was eight months pregnant.

I recovered and am doing well in my life so is my other sister with her new born baby. The sister with MS is struggling with everyday life but we all are moving ahead. Once a while, I hear this friend is sick, the other one has died, etc... We all are going to die. Friends used to tell us, what is wrong with your family? But there are so many out there with so many more health issues.

The question of "Why me" goes for any condition. Nobody knows how you feel when you are dealing with this health problems. Even the doctors with their many certifications and diploma (most of them have become business people with a little interest about their patients).

Sent by Niloufar | 11:53 AM ET | 08-28-2006

Dear Leroy,

The best way to for me to cope with my cancer is to simply ignore it and try to live a reasonably normal life. Even though I am in a clinical trial and get the ole "chemo thrill" every Friday, I still get up every weekday morning, go to work, see my friends and just "deal with it." I know someday I will eventually die from my type of cancer, but that time hasn't come yet, so why bother worrying about it. I just live life "one day at a time." (Cliche, but true) We can encourage our friends and loved-ones through our suffering.

Sent by Larry Hamm | 11:57 AM ET | 08-28-2006

My hat off to you for speaking (or writing) your mind. I am an Egyptian oncologist, 36 years in the field and I ask the same thing about every one of my patients, why him or her? Then I think: there are more trying diseases like a stroke that leaves you paralysed and dependent on others for your most basic needs for endless years or multiple sclerosis or AIDS or Alzheimer's — the list is endless. At least quite a proportion of cancer patients are cured and many live with it a full and meaningful life for years. There is always the full half of the glass too.Cancer to many persons is something that can only happen to others like death, divorce or car crashes. Glad you can talk about it and I wish you all the best.

Sent by Omar Zaki | 2:44 PM ET | 08-28-2006

Leroy I read your blog every day and am wishing nothing but the best for you and I hope and pray that you can beat this monster yet.

I am a total laryengectome and have had four major treatments for squamous cell in the last ten years.

I am currently in the 14th week of a 21-week chemo cycle for terminal lung cancer (mets).

My wife and best friend of 34 years has always been the one I could talk to the one I could tell everything the one I could rely on for support, the pillar of strength I could lean on. She sees no end in sight and ask herself "why me" everyday. You see our daughter had bone cancer when she was 11 and is a right leg amputee. My wife feels that our family has had our share of cancer and does not will it on any one else but yet hopes for a day when there will be no more cancers in our world, as we know it and prays that both my daughter and I are there to see it with her.

Thanks for the sounding board — I really enjoy your writings.

Sent by Les Martin | 2:47 PM ET | 08-28-2006

Last Thursday, I passed the five-year mark since my treatment for breast cancer ended, making me an official survivor, at least in the medical community. Of course, I believe anyone who makes it through surgery and chemo and radiation is a survivor, no matter how short the timeframe. I go forward into my sixth year A.C. (After Chemo) with mixed feelings. Some days I feel guilty and depressed that I have lasted this long when my mother didn't last seven months after her diagnosis. Different time, different treatments, different everything for me so I know it isn't fair to compare. Yet, I'm not sure why I'm still around. Some days I feel like no one understands the daily challenges of dealing with a body that has never been the same since B.C. (Before Chemo). Every ache, pain, and sniffle carries an added concern. My mental state of alert regarding my body and my health is at orange all the time. Sometimes I just get tired from the vigilance. Every day I wake up it's the first thing I think about. It's like setting an alarm that I hope never goes off, but I know it's on all the time. I just wish someone could tell me I could quit worrying about it, that the cancer will never come back, and that I should keep working to build up my retirement funds because I have a future with retirement in it. Instead, I question every day whether I'm wasting precious time left by devoting my days to a job, when I should be devoting it to all those things I really want to do like travel and creating and reading, and most of all, spending every minute I can with my family. Who can tell me if Im making the right choices? I want to know. Some days, not knowing is sheer agony. Was getting cancer the message to re-evaluate my life? Have I ignored the message? Do I ignore it every day that a new ache or pain reminds me that it could be a recurrence? Cancer never goes away, I couldn't agree more.

Sent by Lynn Stump | 4:06 PM ET | 08-28-2006

I wrote you a few weeks ago about a few of the hundreds of naturopathic cancers cures currently available. I just don't understand why people like you and all the people that listen and write to you don't read books like The Definitive Guide to Cancer by W. John Diamond. So the doctors continue to tell them to remove parts of their body and endure radiation, chemo, etc. Yet ginger and garlic are considered dangerous, unorthodox and myths in terms of curing illnesses like cancer. So instead of being a real journalist like Bill Moyers for example, you talk about ice cream and how uncomfortable it feels to be a cancer guy. I just don't understand. Please help me to understand — is it so difficult to take responsibility at the very least for your own health? I had cancer many years ago and refused even a simple biopsy. Instead I changed my lifestyle and gave up the so called comfort foods which you say you are unwilling to do. That's fine, but why then do you have to write about it and thus encourage others not to be courageous, to not do their own research and to not think for themselves. Why don't you go "report" about another war from some four-star hotel while eating ice cream?

Sent by Chris McVay | 4:08 PM ET | 08-28-2006

In November I will reach the three year anniversary of my diagnosis with stage three oropharyngeal cancer (base of tongue). My family tree blossoms with various cancers on both sides. But neither of my parents — my father will be 96 in September and my mother is 92 — has had more than the easy cancers (which Ive also had}: actinic keratosis, basal cell (sun damage), myxofibro sarcoma). My brother has already died of esophageal cancer. My sister is considering genetic analysis.

However, there are worse genetic curses. My mothers dementia increases, and my fathers wonderful, clear mind — a database of facts and reflections that was a wonder to draw on — is fading and approaching (think database) a broken connection.

My cancer will probably come back. But seeing my genetic future, perhaps thats not so bad. I think Ill just concentrate on beating the next battle. And if I don't ... well, at least I wont get impossibly old. Right now I'm 68, and that's not too bad.

But I cry and hurt when I read of a kid dying of cancer. I mean, why them?

Sent by Ann Frye | 10:03 AM ET | 08-29-2006

I feel that more needs to be done to educate the public about colon cancer. The medical establishment has done a pretty good job at getting the word out regarding initial colonoscopies at age 50.

But how many people are aware that there are forms of colon cancer that are hereditary and can develop during the teen years? I never knew this and neither did anyone in my husband's family or mine.

My husband was 33 years old when he was dxd w/stage IV colon cancer last year. There was extensive liver involvement and the doctor at MD Anderson told us he had never seen so much disease in the abdomen. This is at the age of 33!

My husband had undergone a complete physical less than four months prior to his dx and came home with a clean bill of health. His only symptom at the time of dx was extreme back pain. When you're 33 years old, and have no knowledge of a family history of colon cancer, that's not the first thing that's going to come to mind!

My husband lived 12 weeks after his dx and spent his 34th birthday as an inpatient at MD Anderson. We weren't faced with having to make many decisions regarding his treatment because his time was so short. We always had hope, though.

Now I have the knowledge and the responsibility to make certain that our two children are tested for colon polyps as early as age 10. That's a sentence I never imagined myself saying or typing before their Daddy's diagnosis!

So, during colon cancer awareness month and at anytime colon cancer is being discussed, I think information should be included that lets people know it can strike long before your 50th birthday.

Sent by D.L.N. | 2:36 PM ET | 08-29-2006

Leroy, as I have written before, I so appreciate your words, your ability to articulate the challenges of what so many of us are going through.

I have a rare gallbladder cancer and while I do see the commonality of what all of us with cancer experience, there is a special loneliness in knowing that I have been diagnosed with a disease I'd never heard of and that so few other people have. (The American Cancer Society raised the number of expected cases this year in the U.S. from 7500 to 8750 earlier this month.) Because it's been challenging gathering information about my particular diagnosis, I have created a blog to discuss what I've learned and also to talk about the spiritual challenges of living with a terminal diagnosis. And yes, I do wonder "why me?" Don't all of us with cancer wonder about that at one time or another?

As I read the comments following your blog, I was angered by Chris' remarks. How he chose to deal with his cancer is his business, but that doesn't mean he should be telling everyone else how to deal with their illness. I actually was eating healthy food and taking good care of myself when this diagnosis came and yet I'm sick. I wish there were a magic solution, but I haven't seen one.

Thanks, Leroy, for speaking for so many of us.

Sent by Lynne Dahlborg | 2:43 PM ET | 08-29-2006

Little is known about oral cancer. Every hour of every day someone dies from oral cancer. Like colon cancer, we have the ability to diagnose many oral cancers long before they become a death threat. In fact, as many as 70%-80% of oral cancers can be caught by a seven minute screening by a dentist or oral hygienist. The sad thing is that many insurance companies won't pay for the diagnostic test yet they are stuck with expenses thousands of times more expensive in the long run. A PET/Ct scan is a good example. It can detect cancer at the cellular level and is very reliable. Yet, the price tag prevents authorization by many insurance companies. The pharmacy bill alone for one month during my treatment reached a quarter of a million dollars. Lucky for me, I am allergic to IVP contrast so ct scans with contrast are not an option.

Best wishes always.

Sent by Ed Brown | 2:46 PM ET | 08-29-2006

Cancer has touched my family this year, for the first time. My daughter's boyfriend was diagnosed in April with tongue cancer. He just turned 19. Since then the Dr.'s have removed it and most of the lymph nodes in his neck. He is now undergoing radiation on his voice box. They both are AMAZING examples of courage. They feel that a tongue is a luxury you can live without. I am learning a lot from them.

Sent by Leah Wellman | 11:23 AM ET | 08-30-2006

I do not have cancer, but I've lost a loved on to it, and wasn't able to be with her hardly at all when she was ill. I know she died with her faith intact, but mine was more than shaken.

I want to thank you for helping me confront some of my fears about cancer and death. Each time I read your blog I feel as if you are taking my hand and leading me through, saying "Here. It's like this." It's helpful, but even more importantly, it's comforting (and that's including the bad days). I don't feel so alone in my fears. Thank you for being a teacher to me.

Sent by Anna | 11:30 AM ET | 08-30-2006

My mother and father both died of cancer, in 1983 and 88. My father had sugery to remove part of his upper intestine (he was a chemist and this rare cancer occurs with higher frequency in chemists). He had the hiccups for four months until he died.

I'm now as old as my mother was when she had brain cancer. Thank you for writing your blog. Our life is punctuated with reminders of our mortality. Yours is punctuated in hours, not months or years. You will be remembered by thousands of people. You've done something with your life. You can let go feeling that you helped many people and made a difference in their lives.

My father resented his cancer and was bitter until the end. It was hard to be around him because he felt robbed. I think he robbed himself of the time he had left. But I don't know what I would do if I felt so rotten. The doctors did not do chemo or radiation on him, and my father took no part in the decision making for his treatment. Why were they asking him? They were the experts.

Each day is a gift. There is a lot right with you. You have your brain. I wish you peace.

Sent by Niki Robertson | 11:35 AM ET | 08-30-2006

Leroy, I'm glad you are sharing yourself with us so candidly. I think that your chronicle will reach into the lives of many people for long generations to come. That is truly something to be proud of. I am a college student in my final semester, and I have had a wonderful opportunity to take classes under a professor who has triumphed over two rounds of malignant cancers and numerous infections. She is a fighter and an inspiration to us all. She always tells us, "I'm a fighter. It can't get me — only God can get me when he's ready." She's something else. If she can do it TWICE, all 46" of her, I think that you can, too. But even if her personal legend is different than yours will be, we all have to die somehow, some way. You can make your trip through life triumphant or you can make it tragic — but no matter what happens to you, you decide how you feel about it and what you're going to do with what you've been handed. At least that's the lesson I learned from my teacher. I think you're doing a wonderful job of making something beautiful and lasting.

Thanks and Prayers.

Sent by Becky Westbrook | 4:25 PM ET | 09-01-2006

Leroy:

I learned today of your condition and about the blog you are writing. I received word through email as I was on the scene of a shooting where a police officer shot and killed a 20 year old man who supposedly had attacked the officer. As I waited outside the crime scene tape for more word on the shooting, I noticed a young woman staring at the scene and trying to see better the body which still lay on the street. She had this distressed look. She told me that an hour ago she received a call from her brother that their youngest brother had been shot and killed by an officer. Now she was waiting and hoping that it was not her brother. Years ago when you and I worked together in local TV news, we encountered stories like this several times a month. But, we always kept our distance. We put faces on stories but usually it was faces we did not personally know. So now I know the face of someone who is battling cancer and is brave enough to make his fight public. I now can better understand the anxiety and pain of that woman I met today on the other side of the crime scene tape... helplessness. I now can only wait and watch on the other side of the country. Hang in there my friend and continue to make me envious that I could write as well as you. Keep the words flowing. And Oh, Yeah....HAPPY BIRTHDAY!

Sent by Lloyd LaCuesta | 4:47 PM ET | 09-01-2006

I never asked myself, "Why me?" after I was diagnosed with cancer. I don't know if it was because I had so much else to think about, but the question just didn't come up. Much later, people asked me if I asked myself "Why me?" But instead, I found myself asking, "Why not me?" I'm in a low risk category for breast cancer and there's no history in my family (I've read only 20% of cancers are genetic anyway), so I had every reason to ask why this was happening to me. But it just seemed an irrelevant question.

Once in a while, I learn of someone's death — someone who makes people around him happy and contributes something valuable to his community or society at large (someone like you) — and I start to think, "Why him?" And then I think of other people who contribute nothing but misery to the world around them and think these people should die instead.

When I was in my twenties, I heard about a man at the local church who had died of cancer, leaving behind a wife and two very young children. I was single and childless at the time, working as a journalist but not the kind of journalism that makes a difference in anyone's life. And I found myself thinking that if I could trade places with this man, I might do it. I didn't have anyone who needed me as much as this man's wife and kids needed him. Sure, I had family and friends who'd cry a lot and miss me, but that's different from having kids who need a parent or a spouse who needs a partner in life.

Now that I have cancer myself and I have two young kids, if someone offered to trade places with me, I might accept. Sounds terrible, and I'm pretty sure I wouldn't be able to actually let someone else die in my place, but I think I should do it for my kids.

If I were single with no kids, I think I'd be more willing to die. I've had a pretty good life. I've been very lucky, and I can say I've had my fair share of happiness and accept that I should exit the stage now.

But having two young kids changes everything. I need to stay alive long enough for them to know their mother. Even if its just in their memories, they need to have a mother. And I need enough time to make those memories. They shouldn't have to grow up without their mom. So back to the original question... not "Why me?" but "Why them?"

Sent by Shin | 1:07 PM ET | 09-07-2006

Recently I noticed a lump on my neck, and have most of the symptoms associated with esophagus cancer. I went to a doctor today at my clinic and let him know my concerns and symptoms and he didn't seem too concerned. Well, I am very concerned since I am a cancer survivor going on seven years now. When I was 25 I was diagnosed with Thyroid cancer and had a thyroidectomy, seven cancer tumors removed and radiation therapy.

He says that the lump in my neck is a saliva stone, and I would like to believe that too, but I don't have symptoms for a saliva stone and how would he really know without running any tests?

I am completely freaked out at this point and would just like some answers. They did my semi annual blood work test today also and the doctor said that if I did have cancer again that my blood levels would be messed up. I guess I don't fully understand because they checked my blood before I was diagnosed with cancer the first time and nothing alarming showed up. I thought that I would have to have a biopsy or something to really know what's going on. Should I seek a second opinion or am I just being paranoid?

Sent by Mindy | 12:48 PM ET | 09-08-2006



   
   
   
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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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