Commentary: What Are We Really Scared Of?

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

So many people have written in to the My Cancer blog to talk about their fears. What will the next test show? Will cancer that was gone come back? Will there be more bad news? We've all been there — those dark hours in the night when it can feel like all we have is fear.

People with cancer get used to bad news. After all, they get a lot of practice. And the doctors are very good at breaking bad news. But no matter what the words are, the patient can usually tell ahead of time. It's a look the doctors get, the way they back into the bad news.

Now, you can tell yourself to expect the worst. Trouble is, with cancer, you're rarely disappointed. And let's face it, we all know when we're lying to ourselves. Even when we say we're expecting the worst, there's still a little part of us that remains hopeful, in spite of our own best efforts. This time, maybe there really will be good news... It takes a lot to beat back hope.

But what are we really scared of? Are we all scared of death? It comes for everyone. And in many cases, death brings peace. Maybe what we're really afraid of is the physical act of dying. Will it be painful? Will it be slow? Will it be scary?

When I was first diagnosed, I was terribly afraid. I couldn't really explain what I was scared of. The unknown probably. I just know that I was very, very frightened.

But now I think my fears are different.

Now I worry about my loved ones, how they will do after I'm gone. I fear that I am being tested by this disease, but that I may not learn the right lessons. And yes, I'm afraid that my death, when it comes, will be painful — and not just for me. Maybe the biggest difference for people with cancer is that we have so much time to think about our deaths.

I listen to the radio in the morning for the weather and traffic mostly. And every once in a while I'll hear the traffic reporter say that there's been a fatal accident. Some people probably react angrily — another delay, late for work. But that's truly a tragedy. Some man or woman got up, had coffee, read the newspaper, got dressed, left for work. And never made it. No time to think about it. No blogs or podcasts about their thoughts.

But cancer patients live with the spectre of their own deaths always hovering nearby. Maybe time diminishes the fears a little bit. Maybe after living with them so long, those fears lose their power. I hope so, for my sake, and for the sake of all of you who have talked about your fears, and those of you who haven't.

I guess in the end, maybe there really isn't anything that we should fear. It's going to be okay. Really.

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I have never had cancer. I work as a RN, and spent a couple of years working in oncology. It was always a moving and thought-provoking experiance. I love this blog. Mr Sievers is a courageous journalist. He touches on so many topics that I think many of us healthy folks squirrel away in our subconcious—too busy or scared to ask questions or evaluate ourselves and our lives...I wish him the best.

Sent by Susanne Houshmand | 1:42 PM ET | 07-08-2006

Leroy,

Thanks for writing this. It is a poignant article and a thought-provoking one. Twenty-three years ago, I was nearly one of those traffic statistics. I know how fast it can come. My grandparents all died with cancer, and I have had a lover who is going through a decade-long bout with it now. I have seen and felt pain for them, seen it in their eyes, but your words put it all into context. Thanks. And best wishes!!!

Mike

Sent by Michael Westmoreland | 1:45 PM ET | 07-10-2006

Your words today ring so true. I've fought three different types of cancer for four years now and I've come to the point that actually dying isn't what I worry about. I do worry so much for my loved ones, my family and my friends. I worry for my brother and my dear mother who may have to watch me die. I think about them having to dispose of my material possessions, cleaning out my house and giving away my clothes. How horrible it will be for them. How they will cry while they do it and cry again in the middle of the night. That to me is the worst. I'm 52 years old and I've had a good life; if it ended tomorrow I believe I'd be in heaven waiting for my family to join me. Don't get me wrong, I am terrified of the bad news each time I go to the doctor, but I also continue to hope for the good news. Despite the strength and insight that cancer seems to bring, we are all still only human. Thank you for your words, they are a great help.

Sent by Cynthia Williams | 1:46 PM ET | 07-10-2006

I am two years post-treatment. I was diagnosed with squamous cell carcinoma of the base of tongue and for now I am in remission. I am given less than a 40% chance of making it to the 5-year mark but I don't count the days or even accept the percentages. For me, percentages really make no sense. When it comes down to it, you are either 100% dead or 100% alive. Technically, there are no "middle" percentages. You can't be 60% dead and 40% alive. You either are or you are not alive. I work daily on the premise that I am 100% alive (I can't cognitively work on the other). It has been my experience that living life to the fullest means just being alive, and accepting everything else as a bonus. So, being alive for just today is having all the time in the world; as the saying goes, "yesterday is gone and tomorrow never comes." Today equals all the time anyone has. The fact that one has today is enough and "death be not proud."

Sent by John Biba | 2:06 PM ET | 07-10-2006

Thank you for this deeply personal blog. It reminds me of a documentary film I recently saw at the SilverDocs film festival called THE BREAST CANCER DIARIES in which a young woman documents her experience going through cancer treatments. I am humbled and amazed that so many patients have the courage and strength to share their experiences with others.

Sent by Julie | 2:58 PM ET | 07-10-2006

Because I am a "cancer survivor," (whatever that means), I am always waiting for the other shoe to drop. As I follow your story I am now wondering if it is better not to know that you have this or these tumors lurking and growing somewhere inside of you? Especially when you have NO symptoms and you can live with the daily hopes and expectations of life.

Instead of spending your last months or years torturing yourself and soul-searching? I too am a control freak but I tend to think now that it is better to get on with living as normally as possible until you are forced to face up to and deal with it. I have observed loved ones; some of them had these horrible treatments, which tortured both them and their loved ones, and a few of them chose to leave it up to God and live life till the end. You know, they ALL lived the same length of time and when the going got rough, there were pain killers to help them through.

Sent by Jeanne Rakowski | 3:00 PM ET | 07-10-2006

Hello!

I enjoy your blog, especially the commentary I can hear, as you have a great voice. My brother, James Stone, aged 39, died of cancer (stomach) last May, leaving 4 children. As he was dying, I interviewed for, and got, a job at Fred Hutchinson Cancer Research Center here in our hometown of Seattle. I am a cancer information specialist, answering calls from across the country from people who have questions about cancer. Life is so very funny.

We are required to do so many continuing education hours, and reading your blog counts as such. Thank you for sharing your experiences and thoughts - I know it takes a lot to do so.

No special point really. Today is my birthday, and my prayer for this day is that you will live out a wonderful life, however long it may be. Know that you are, and will remain, a shining star in lives you will never know you have even touched. For what more can one ask, really?

Sent by Sharon Stone | 4:29 PM ET | 07-10-2006

My life partner of 17 years died on April 23rd. She was 43. My father died of cancer 2 years ago, and my youngest brother succumbed when he was only 22 years old. If it's not too presumptuous, I feel like a survivor myself. My partner was diagnosed with a rare form of cancer (small intestine), and lived with this disease for 4 1/2 years. Thanks to the dedication of her doctors and her good physical condition, she lived much longer than originally predicted, and I hope that gives you encouragement.

I can talk to you about my thoughts as someone who sat by her bed for the many, many hospital stays, joined her in the treatment rooms and held her hand as she took her last breath. You say that your fear shifts from yourself to your loved ones and how they will fare in your absence. Well, the only time I saw Doreen choke back tears was when she apologized for doing this (getting cancer!!) to her mother and me. She knew how much we both depended on her to bring joy and laughter to our lives.

I find myself wondering how Doreen would have functioned if I were the one who died. I wish I could get some direction from her — some sign as to what I should do or feel or where I should be. I ask myself that because it is very difficult to find meaning in my life. I wander around the house on the weekends, trying to find something to do that would fill in the hours before I return to work on Monday. When you help someone through this disease and through the end of life, simple diversions seem trivial and unworthy. I'm sure in time that will change. I've also come to realize how much my enjoyment of leisure activities was really in the company I kept, not the activity itself. My life was so consumed (as I wanted it to be) with her disease, and it isolated us both from the rest of the world, and I'm trying to find my place in it.

Caring for her in those last months gave my life more meaning than most of my earlier existence. I could never convey to her how much it helped me to provide her with the care she deserved. She often apologized to me for taking so much of my time to nurse her, but it helped me so much to do this for her.

My personal message to cancer patients: Please let your loved ones help you, and don't feel guilty when they do. We cannot take away this disease, so let us do what we can to help enhance the quality of your lives, and by doing so, enhance ours.

Sent by Kathryn McCauley | 4:44 PM ET | 07-10-2006

Leroy,

I am a one-year survivor of breast cancer. At the age of 40, cancer was never on my radar screen. Now, every three months, I go to the oncologist for a check-up and hope for the best. My husband knows when the appointment is coming up because I get a little more quiet and introspective. I do get nervous. Am I tired because the cancer is back or because I am carting my 7 and 11 year old to their activities, working a job that involves travel and not sleeping well due to the tamoxifen? The thoughts of a re-occurrence are always there. Sometimes in the back of your mind and at other times squarely in the front!!

I so appreciate your comments on living your life. I have tried to slow down, enjoy life. Just yesterday, my 7-year-old daughter wanted to set up a lemonade stand. We had such a great time just sitting out (in the shade and 104 degree weather) and selling some lemonade. She was brilliant and loved creating all the things that go along with the lemonade stand. I did not worry about the laundry waiting to be folded or the stack of photos I keep promising myself I will get in some sort of order. We just sat there and served up lemonade and laughed and enjoyed our time together (and of course, I took a picture of her).

Thanks again for your words of wisdom, hope and truth. I wish you all of the best.

Sent by Jill Brusco Fox | 5:22 PM ET | 07-10-2006

I learned I had throat cancer 3 1/2 years ago. Luckily, it was in a T1 stage. I finished the 2 surgeries and all the radiation treatments 3 years years ago last month. Since it was in the upper throat, the whole mouth area had to recieve radiation. As a result, my taste buds quit working for about 8 months. It will probably never catch on a popular diet plan, but I did lose 50 lbs. But the thing that was very hard for me was when I awoke in the morning, before I remembered that I had cancer. My mind would run through what I planned to do that day-then it would strike me that I had cancer and all my plans went out the window. I don't know if you have had the same experience, but that was one thing that I struggled with often.

Good luck to you.

Bob

Sent by Bob Pechacek | 3:22 PM ET | 07-11-2006

You touched upon a nerve for all of us with cancer. The whole "death thing." It's one that is on my mind in some form every day. I don't have panicky thoughts about it, but I also feel that my Stage 4 breast cancer is responding well to treatment, that it's not an agressive form of the disease, and I should be okay for many years to come... unless. I have had so many serious complications, losses of function, issues around family distancing themselves emotionally, AND physically (both of my siblings moved hundreds or more miles away within the last two weeks)that I've had problems with depression and have felt like all of my emotional reserves are used up. I'm trying to recover my equilibrium, and at my last oncology apt, my doctor reminded me that one day, I'll have an appointment with him, and it WON'T be good news,and I'll need to have reserves to cope with that when the time comes. I'm working on that now. I take support and comfort wherever I find it, and give it to other breast cancer fellow travelers on the Breastcancer.org website. I hope that we all have what we need to deal with the end whenever it comes, and however it comes.

Sent by Nancy K. Clark | 9:42 AM ET | 07-12-2006

Six weeks ago I was diagnosed with gall bladder cancer, which is rare, aggressive, and doesn?t respond well to treatment. A few weeks ago a friend sent me a link to your blog, and I'm so grateful to her for doing it. You are articulating so many of the things I'm thinking and experiencing, and I haven't even begun chemo, as I?ve been recovering from surgery.

I especially appreciate this entry, as you talk about fear and about death. As I've struggled with my diagnosis of terminal cancer, I have felt many, many different emotions, including anger that I haven't known people with terminal illness who talked about their fear of dying, their thoughts, emotions, and impressions as they contemplated the possibility/likelihood of their impending death. Is it our fear that keeps us all from talking about it? As you say, we all know that dying is a part of life, but we don?t act as if we know it. How do we live as fully as possible when faced with a likely death? I am puzzling this all out as I deal with my diagnosis, and I want to hear from others who are attempting to live fully while aware of their mortality. So, I appreciate your including it in this blog. Thanks!

Sent by Lynne Dahlborg | 9:48 AM ET | 07-12-2006

I have had the great blessing of having sheperded many people, along with their families and nurses through terminal illnesses, cancer mostly. In addition, a loved one died in my arms, in our home, of AIDS, he was not yet 25 years old. This August 12, will be the 20th anniversary of his death. And I was alone at my dad's bedside as he took his last breath. All the grief is worth it knowing that they felt loved and cared about. Thank you for doing the blog and letting people show you that they care doesn't necessarily make your road easier to walk, but hopefully the load a little easier to bear.

Sent by Sandra Yudilevich | 9:50 AM ET | 07-12-2006

it is the most diffacult i have ever dealt with

Sent by mookypalooky | 5:02 PM ET | 04-15-2007

Leroy,
Your blog has a powerful honesty and reflection in its purest form. What an incredible contribution. Addressing the fear of death in such a lucid way uncovers the hidden beast behind so many of our concerns. Your willingness to share your thoughts is a very valuable gift. Thank you.

Sent by Reza | 4:06 AM ET | 09-08-2007

I used to fear death but that changed after I lost my only child, a 16 year old daughter in a car crash. My journey through grief was truly a journey through the valley of the shadow of death. The only way through the valley was to embrace my grief and to seek the truth about life after death. My search began with death (of the physical body) and came full circle back to birth (of the physical body). Physical death is simply a natural transition of one's spirit/soul through the continuous cycle of growth and maturation. The peace that I found is always with me, through good times and bad times. And the truth is, it will be with me as I shed my physical embodiment and move forward into a new sequence.

Sent by Carol Wilhite | 12:29 AM ET | 04-03-2008



   
   
   
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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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