A Victory over Fear

How do you make the shift from trying not to die to living? That's the question that one person sent in yesterday. A woman named June sent in another one:

"I know I should learn to enjoy life now, and what will be, will be. But how do you move past the fear?"

I think that they are related.

I think we all have a sort of idealized sense of "living." Making the most of every moment. Stopping to savor the little things. Living a full and meaningful life. And those are all true and things to aspire to. But they're not possible every day or every moment. A bad day for a cancer patient can mean doing little more than just getting up in the morning and making it to the couch. Life with cancer can be full of pain, sadness and despair. But not always.

I think that "living" just means doing the best you can on any given day. That's also true for everyone who doesn't have cancer. You don't have to go out and change the world every day. I think that just being the best person you can be under the circumstances, sometimes rising above our challenges, sometimes not — that's all "life."

Trying not to die is all part of that. I think it was John Lennon who said that life is what happens to you while you're busy making other plans. So let me butcher his words and say that life is what happens while you're trying not to die. Everyone has plans, everyone has dreams, things they hope to accomplish in the future. Cancer patients have those plans and dreams curtailed at best, taken away at worst. But that doesn't mean you stop living.

So how do you get past the fear? Fear of what? Of dying? It's a cliche to say that we're all going to die — that's cold comfort. The fear of bad news, of the cancer spreading, or that initial diagnosis — all of those things strike deeply into our cores. But each day, each joke you tell, each friend you comfort, each friend you allow to comfort you, each of those small things lessens the fear a tiny bit. Each day lived, for better or worse, is a victory over fear.

We've talked a lot about how doctors are playing for time. How an additional few months is seen as a triumph. All of that's true, but I think that we need to remind ourselves that while we can look to the future with confidence or fear, hope or despair, that it's today, well-lived (however you define that), and tomorrow and the next day — that's what makes up our lives.

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I quote John Lennons "Life is what happens when you're busy making other plans" a lot. It's really appropriate in our situation — coping with cancer. I think that what can help one to really live, and not just exist through it is to look for the messages that it brings, and to respond to the opportunities that arise from it. In my case, it forced me, a caregiver to become a patient, and experience the other side of that dynamic. It changed how I work as a nurse now. I'm no longer doing direct patient care... that's no longer possible, but in the job that I do, I've become more empathetic with the injured people that I work with. I'm also less patient with those who choose not to participate in their recovery... who blow off their therapy, don't show up for doctor appointments, because I know that to get well, one has to "get with the program" and be a partner in recovery with those caring for you.

Even when I've been the most ill, I've been blessed with the opportunity, via the miracle of an always available, international breast cancer chat room (breastcancer.org) to find companionship, humor, support, and the ability to help others. It's truly a miracle to be able to chat live with another woman in London or Australia who is just diagnosed, terrified, and not even sure of what questions to ask her surgeon or medical oncologist at the first appointment. To have that ability is truly a miracle that Im thankful for every day.

I don't know that I'll ever get back to Paris... a dream of mine, but even if that doesn't happen, I can still do my best to reclaim more and more of my life.

Sent by Nancy K. Clark | 12:21 PM | 9-7-2006

Everyday I read your blog and today was an exceptional post, so beautifully expressed and so reflective of the harsh reality of your brave journey. Those who face cancer, Parkinson's and other ailments, know the value of each and every moment. You exemplify on a daily basis, the real meaning of life. I have become a better human being by reading this blog. Persevere, were all counting on you to.

Sent by Susan | 12:24 PM | 9-7-2006

I believe the statement we are all going to die at some point is a bit trite. However, as my mother was living out the final stages of ovarian cancer, I asked her to write down all the things in life she wanted to do. We spoke often of unfulfilled dreams, of the end of life coming closer everyday in the context of all of us. One day she had a revelation. She told me that the only difference between her and me was that she knew her life was ending soon and that certainty of impending death was more than what I had from a pure time perspective.

I used to pray often for a miracle cure for this horrible disease and my prayers changed to giving people a little more time to do what they want to in life to provide comfort and peace for the entire circle of family and friends. I certainly include you by name in this request.

Best wishes always.

Sent by Ed Brown | 12:35 PM | 9-7-2006

Mr. Sievers,

I have been reading your commentary blogs off and on now for the past several weeks. Although I do not have cancer, I am very encouraged by what you write. As you recently reminded all of us, life must be lived-well and not lived in fear. You're right, we all have up-and-down days, but how we respond to those days really does define the quality of life we live.

You may have already discussed this in a previous blog, but I am really curious about the hope that you have for the future, as opposed to despair. Where does this hope come from? How is it maintained?

Thank you for your ongoing encouragement to me and many others! My very best to you as you live life fully today! Carpe diem.

Sent by Eric Neessen | 12:44 PM | 9-7-2006

I think you have expressed a fundamental idea about life that many of us don't relate to very well until life smacks us in the head. Everyone knows that everyone will die. The only unknown is "when" and "how." A great amount of fear can swirl around all of that if we let it. Today, this minute, this moment is all we've got. So, make the best of it. Do the next right thing. Don't let the guilt and shame of past wasted days prevent you from living today. Don't let the threat of a disease, the presence of a disease, or the recurrence of a disease stop you from living today. Whatever that means to you. I don't need to jump out of a plane today to feel alive, but today you might need that. Today I want to speak with love and compassion. Today I will try not to let other people bring me down. Today I will be good to myself. Today I will love and be loved. These are all choices about my day... today. If I'm stuck in the past or fearful about the future, my gift of today is gone never to be found again. I have found this idea in Buddhist teachings, recovery programs and in the seemingly little anecdotes of life. It is all around us if we choose to see it. I'm a hard sell and need to be convinced of something pretty thoroughly. Sorry/happy to say cancer finally sold me on the idea of today. It took me to places I would have not gone without it. My today is very different than it was before cancer. Nothing outside of me has changed necessarily, but how I see the world and its reality certainly has. I just want to say, today, this world is enough. It never used to be. Today it is. Actually I have found it to be more interesting and challenging than my mind could ever imagine. What is real is enough. I don't want to miss a minute of it. I pray for everyone to find a teacher and learn in their heart the life lesson of today.

Sent by Missy | 12:52 PM | 9-7-2006

My life philosophy is based on John Lennon's quote: Life is what happens when you make plans. There is nothing guaranteed in this life, no matter how well anyone plans their life. I was in the very best shape of my life, I did all the right things, ate all the good foods and I had a child that was born with a cleft lip. He is now a wonderful 25 year old chef and silk screen artist, but still, the memory of seeing him with that cleft can bring tears to my eyes. My husband and I did all the right things and yet... Life.

You are so right when you write that you don't stop living when diagnosed with cancer. People don't stop living when diagnosed with any disease — ALS, stroke, MS, diabetes — the diagnosis changes the way you live today, tomorrow, the next day. But we mustn't be afraid to live and to make plans.

Thoughts and prayers for you and yours.

Sent by Emily | 12:54 PM | 9-7-2006

Thank you for sharing your ongoing battle with cancer to so many of us. You are truly an inspiration to those of us with cancer.

I have been battling melanoma since 2000. I have had 11 surgeries on my head and three skin grafts. I am currently going through radiation treatment five days a week.

I am dealing with a dimension or dynamic that none of the other cancer patients (lung, colon, breast, etc.) are going through. My latest surgery on my head left me with a 4" x 4" crater right in the center of my head. Other cancer patients including breast cancer victims can "hide" their cancer, or have it not show. I am totally deformed, and, although I can wear a hat most of the time, there are situations where it is inappropriate to wear a hat. I am a 64 year old male with male pattern baldness, and I am not the least bit vain, but along with all the things you mention you have to contend with daily, I have this freakish appearance that I am learning to live with. At first it did not bother me too much, because after the latest surgery I was just so happy to be alive, but how soon we forget. Now, I think about how I am perceived by other people more than I wish to.

Please fight the fight. My prayers are with you.

Sent by Snuffy Herring | 4:13 PM | 9-7-2006

Last year my sister-in-law called me to talk about taking an expensive family vacation. I joked with her that after I'd recently maxed out my retirement contributions I didn't have much discretionary income left for things like cruises. Her reply wasn't such a joke. She asked why I was even putting money away for retirement. After all...

While the experience of cancer is often on my mind it is no longer physically a part of my daily life. It was devastating to realize that while I'd conquered fear, I'd managed to shift my focus back to living, in the minds of some of my friends and family they hadn't taken that same step. I'm working on their attitudes.

I plan to become a very senior citizen!

Sent by Joan Marie | 4:18 PM | 9-7-2006

You talk about fear. Our family has a new coping strategy for dealing with the fear of disease. In our house a sick and twisted form of humor has taken a strong hold of our lives. We can't afford to be ruled by all the fears that come with cancer — especially those fears that arise as you read through websites, very well intentioned Web sites that describe the consequences of "most serious cases"... what cases are NOT serious? Today I read the schleroderma foundations Web site. My brother, who already has lupus and a brain tumor, was diagnosed today. We suggested he begin to rate his maladies by most life threatening, best support groups, best t-shirts from fund-raisers, least tolerable side-effects. We laughed. We fear for the future, but we laugh. My sister just spent her second day in the hospital on her chemo IV drip for melanoma. A friend is bringing dinner to her and we laughed as we talked about the how likely it would be that she would not or could not, as you have most accurately described, enjoy the meal. Our friends fear for us, so they bring us food.

I have been blessed with three fantabulous children who make it easy to get up each day — although I really didn't have any say in the matter since they didn't offer a vacation package in the mom-on-call employment contract. I often wonder what they fear — the questions they have and are afraid to ask. Maybe the conversation they overheard a piece of and it has generated more fear. I also have a primary brain tumor and have been Frankensteinish, tired, bald, and sometimes just a nasty old grouch. But my children have endured. I wonder what they fear, but I am afraid to ask. Will I only be putting more ideas into their heads or will I really be able to alleviate some of their unspoken fears. In the meantime, were off to the middle school football game to raise our voices as we cheer and shout.

In the event there is any curiosity about how three siblings could all have some form of a cancer, we decided we were born in a cesspool.

Sent by Molly Hooper | 12:41 PM | 9-8-2006

Thanks for your beautiful article. I learned a lot from them. Everyone should hold an optimistic view on life and don't be afraid of things which seem to be terrible. Come on!

Sent by Ann | 12:52 PM | 9-8-2006

I have only just begun to be a "fan" of your blog having heard you being interviewed on NPR one morning. I do not nor have I ever had cancer, but am the wife and care-giver of a cancer patient. Our cancer was located on the back of his tongue so the treatment was intense, the side effects brutal, but the outcome at this moment look very good. Being the "well" person in a battle of cancer also has its challenges — one of the biggest being adjusting to being a caregiver and giving up being a wife. As cancer patients know, you are very focused on maintaining and coping minute by minute. My job, of course, was to make this job of my husbands as comfortable and stress free as possible. My every waking moment was devoted to his comfort and well being. What I noticed was a strange feeling of detachment from him as a husband — our communications were solely based on his needs for that moment. There was no banter, to trivial discussions about the house, yard, or family... just the state of his cancer and how it was affecting him. It was a lonely time for me, though I found solace in my yard, my friends and my church while he lay in his chair trying to cope. I have great empathy for the patients who have to end in sight — always looking to the next CT scan and hoping it is clear, but finding it is not. How does one live with such uncertainty? I suspect one only lives day to day and hopes for a good day, forgoing the hope for a good life that day. I think your daily blog is a raft for you in a sea of unknowns and it is also a ray of hope, insight and encouragement for those who read it. I am hoping and praying for some end to your battle as I do for all my new friends from the treatment center. Keep on the upward path...

Sent by Sydney M. | 1:48 PM | 9-8-2006

To Leroy and all the respondents, I thank you very much for giving the opportunity to read about your experiences where everyone of us sees his/her own reflection. I find comforting to know my sentiments are felt by many others. Thank you for putting them in words for others to read.

Sent by Angelo Balistreri | 5:30 PM | 9-8-2006

My name is Denise, I'm 37 yrs old and I have Stage 3a uterine cancer. I wrote the following in a forum board which I share my story of living with cancer. It's important we share and band together in this fight...

Is there a point in life when you realize your living through your worst fear?

As a child I watched a late night TV show, Night Owl Theatre, which featured horror films every Friday. One film, in particular, stayed ingrained in my mind because of its bizarre premise.

The film started at an estate in England, set in the late 1800s. The guests were immediately brought to the dining room, upon arrival, where they could eat and talk over a late dinner. The topic of conversation was started by the host who asked, what is the most feared death one could die?

People begin to share how they feared dying. One person claimed drowning was their worst fear, while another shared burning to death by fire and another insisted sudden illness by poisoning was the worst way for them to die. Everyone shared the method of dying that night until the dawn and then they all retired for bed.

One by one each person began to die in the days that followed the late night dinner table discussion. After the second death they realized they were all doomed to live through the method they shared living and dying at the hands of their worst fear.

I never knew my worst fear, or should I say, I never recognized my worst fear until recently. I had clues my entire life as to what this fear may be, but I shut it out of my mind attempting not to address the core of my fear. I think most people have an idea of what they fear, but few people actually look deeper than the surface of the fear keeping it safely hidden inside to be dealt with another day.

The day my worst fear surfaced, where I could no longer keep it at bay, was in a hospital bed. I read the pathologist report earlier that morning; I couldn't take in the words I was reading my mind shut down. It wasn't the diagnoses the doctors had promised, not even close.

The doctor stood over my bed, while I lay there sinking into covers in utter fear and helplessness, explaining how serious the situation had turned {giving me little hope of survival}. I felt alone though the room was filled with doctors, nurses, and my husband.

My fear wasn't the obvious, 'the fear of dying', it was the fear of facing the fact I would have to face death alone. I recognized as I laid there listening to the conversation about my impending treatment and possible death, Im alone in this world.

Being diagnosed with cancer brought my fear to the forefront. I would have to endure many things alone. Not alone in the physical sense, but alone mentally {which is the worst out of the two for me to deal with}.

Ive had many revelations about life during this illness. The revelation that surprised and shocked me the most is that life continues on regardless of your own personal situation. My life stopped that day in the hospital room suspended in a state of utter despair, waiting for an undetermined amount of time to resume.

The first chemo treatment I received went horribly wrong. I was extremely sick and weak. My mind operated on instinct, because my body was too busy dealing with excruciating pain. While crawling to the bathroom, through an open window, I heard the sounds of my children laughing and playing outside. I heard my husband?s voice laughing too, as he played along with them.

While listening to the sounds and voices of what was going on outside, I realized life goes on {with or without me in the picture}. My children's lives move forward, whether I am here or not. My husband's life continues on without me. I began to weep uncontrollably as I listened and allowed reality to take hold in my mind. I wondered, what is my importance on this earth? How can life continue without me?

I knew and understood I am alone in this world. I have God to lean on, my children to love, and a husband to hold me but I am alone.

I am not the only one to feel this way. I have been blessed to speak with many women in similar circumstances dealing with cancer and chemo treatments. It's as we seek each other out longing not to be alone anymore. We cling on to each other, giving hope, while receiving comfort. But it is short-lived, because we all have a life outside of each other that continues to silently tick away.

I've tried for months to cling to people, to not feel alone. I noticed the more I needed from people, the more they fled away from me. I know why they leave, its clear to me. Who wants to deal with the emotional aspects of what I am dealing with? No one does. It's easier to avoid illness and death than deal with it.

I'm a person known for having dramatic flare of expressive language among those who know me. My detailed explanations of my journey with cancer only caused those around me to become concerned with their own mortality. Its funny I have to console people around me that everything will be fine {while I speak about my own illness}.

I keep running from the fact I feel alone. Throwing out grappling hooks at people hoping I strike someone who will listen, is my way of not taking control of my emotions of being alone. But this past week, I realized having the feeling of being alone is exactly what I need.

Examining my fear has given me truth and understanding about myself. Ive recognized many weaknesses, while finding new sources of strength. Dealing with this fear has opened a new path for me to walk down by myself alone.

I am attempting to face my fear of being alone. We must all have to face this fear at one point in our lives, whether we want to or not. Each of us, at the moment of death, will face this fear. We may be surrounded by all those who know and love us, but we will leave this world...alone.

Do you recognize the source of your fears? Have you gained strength and understanding by dealing with your fears? Or do you hide your fears hoping they will leave your mind?

Sent by Denise Nelson | 4:01 PM | 9-11-2006

Hi Leroy,

I hope and pray for your recovery. You must be very brave to talk about it as you are. I will be thinking of you as you fight for your recovery and your life.

Sent by Maureen Barkley | 5:39 PM | 9-18-2006

I just wanted to make sure you were aware of the Celebration on the Hill that's happening in Washington, D.C. on September 20. Cancer survivors, care givers, and volunteers are coming from across the country to promote cancer awareness and research. Tents from every state will be on the National Mall and at sunset, luminaria will be lighted around the Reflecting Pool in honor of cancer survivors and in memory of those who are no longer with us.

Sent by Leslie Frank | 5:41 PM | 9-18-2006

I just wanted to add that after I was diagnosed with Hodgkin's lymphoma on September 7, 2001; I knew that I had a fight to win. I was only 23 at the time still a kid and had just finished my first year of college at The University of Texas at Austin. Although Hodgkin's isn't a very difficult cancer to treat, the fact that it was stage 4 and had started to spread made for a longer process with greater risk to return. Every time I went to the hospital to get my 12 hour chemo treatments I was asked by the staff if I had a living will. My initial thought was, perhaps I should fill one out, although I didn't have many material possessions that could be doled out to anyone. Then it hit me, at least in my mind it did, by filling out a will it would signal a small defeat. So I responded with, no thanks, I'm not going to die. I remember the look she gave me after my response and the subsequent smile flashed before asking the next question. Over the next six months, my response never waivered, I simply stated that I'm not going to die and it grew into a daily affirmation through my following radiation schedule as well. It may be simple but that's how I dealt with my particular situation. Faith does wonders!

Sent by Javier Urias | 11:05 AM | 9-21-2006

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