On this subject, I'm digesting something a work friend yesterday. This friend's 17 year old son died 2 weeks ago, not of his leukemia, and not from his marrow transplant but from a stray cell or 2 of a viscious infection in the transfusion bag. The father/friend said "Live without regret, and tell your husband to do the same." Now, that's a bit of a truism, but I was struck because of what this father had been through. He and I, as caregivers, had been talking from time to time over the last 2 years as we both struggled through. He knows my husband.

So now, I'm trying to figure out how to do that, what it means in my daily life with my husband-the-cancer-patient. Plan vacations etc. even if they might not happen? Live happily in the moment? Never go to bed angry? Mulling this over, but seeing my friend's face -- which wasn't downcast, or depressed -- is making me think hard.

Sent by Teri | 6:30 AM ET | 04-03-2007

I do not believe it is death we fear but that which happens along the final path we take to its door.

Sent by Amanda Oppe | 7:01 AM ET | 04-03-2007

that's it! There is so much left to do, so many things to experience and enjoy. I don't want to be left out either. Death itself I don't fear, it's what I just stated plus the slight worry of the pain and mess involved with dying. And can I stay home to die?- to have my husband casually say, we'll see is crushing. I've got a rainy spring day and a round of chemo. There will be something I pick out to make me happy today. It might just be the Carvel I have for lunch after chemo and sitting on the porch with the dog.

Sent by Cheryl | 7:58 AM ET | 04-03-2007

Living with cancer now for almost two years after that initial "six months" diagnosis I've developed a new fear regarding death. I'm worried it will be boring. Fortunately, I've been lucky to be able to continue to function at my job and actually enjoy the rest of my life. I've taken a couple of trips, taken on some exciting (short-term) projects at work but how will I react when I have to stop all of this? What will I do waiting for the end? I'm just worried I will be bored. Enjoy the cherry blossoms I was there a couple of weeks ago when the trees just had small buds on them and I'm envious.

Sent by Dona | 8:13 AM ET | 04-03-2007

Leroy, I understand exactly what you mean. My husband, who died 10 months ago of pancreatic cancer ,at the age of 59, did not fear cancer or even death. It's just that he wasn't ever ready to die; he didn't want to leave right up till the end. He had much to live for and things left to do.

He did fear for me and our children and how we would fare in his absence. As for himself, the only thing he really feared was dying in the hospital, which was interesting because he was a physician.

We were able to quell that fear by keeping him home on hospice care his last eleven days.

I hope that you have many beautiful Spring (and Summer and Fall and Winter and Spring again, etc...) days to look forward to.

Sent by Marilyn | 8:25 AM ET | 04-03-2007

Since my active breast cancer treatment was completed two weeks ago and so far so good on follow up tests, I have been thinking about what I have learned from my experience with cancer. How has it changed me; has it changed me? Now that I have faced cancer and chemo can I expect to 'go back to my normal life' as many suggest. I never liked the concept of 'normal' anyway but what aspects of my prior life should be reassessed for their relevance to me now? Even with my loving husband and caring children and families and friends, I can feel alone. I want to move on. The one thing I have learned is that time does continue to move on; my son was accepted into college; my sister in law seems to be turning the tide on her cancer battle; holidays come and celebrations ensue; happiness remains to be found in the first warmth of spring; all these things and more have been a comfort. Is it just that I was unlucky and got cancer but life goes on? My brother recently asked me how I might change after all this and I said 'you mean turning lemons into lemonade' claptrap? Maybe I need to channel my energies into getting involved in some aspect of the inequality of health care in this country. Or be more active in fundraising altho even before my diagnosis I have supported two cancer nonprofit efforts. Maybe I need to start meditation, a healthier diet, yoga, skydiving? Leroy, you asked the question awhile back about what we have learned from our varied experiences with cancer. What are the take aways?

Sent by jessie | 8:57 AM ET | 04-03-2007

Leroy, I too feel like you about death, at least I think I do. I don't like to think about death, that means leaving my husband alone and I want so much to believe in the everafter, where everyone will be reunited, but for some reason I have a hard time with that. I think I'll just be gone in nothingness. I hesitated to have this latest surgery because I was so very afraid of what my life would be afterwards, even if the surgery was successful. It was a life altering surgery, and I said if I had to do it all over again I'm not sure if I would. A friend of mine said that if I had not had surgery and the cancer took over that too would be a very painful slow death, so I was between a rock and a hard place. I think about that often now. I've got a lot of problems now but hopefully I'll adjust to them, and I do worry about cancer coming back, it's so hard not to.

Sent by Ruth White | 9:29 AM ET | 04-03-2007

Leroy, I too do not fear death. I was really ill, really, really ill, when I was diagnosed and so in a sense I havecircled the drain but was lucky to have a reprieve. I did tell one of my doctors at the time that this cancer business wasn't on my list of things to do for 2005. But here we are in the spring of 2007 and my big complaint is my allergies!
Though my cancer is advanced and has spread (not in the bone, lungs or brain but just about every where else) I am doing well. I do know that and the possibility of a early check out time is always looming so while I'm well I'm going to do as much as I want while I can so I'll be at peace.
I don't fear death, as having touched the void not long a go it is not something unknown. I know I'll be okay what ever happens. But I also am prepared to hang on to the rim of that drain for as long as I can because I really like living the life I have and loving the people I love.

I am so joyful at your good news Leroy, you have been a steady constant for many of us, I read your post almost daily and I really appreciate your sharing so openly the wild roller coaster you are on. Hang in there.

Sent by Susan | 10:30 AM ET | 04-03-2007

In response to the first reply: Terry and I decided a couple of years ago that we were going to stop saying "we'll do it tomorrow." We both knew tomorrow would one day not be there.

We traveled a lot more and if there was something one or both of us wanted, we got it no matter the cost. In the five weeks after Terry stopped treatment, I made a conscious effort to make sure there were no arguments and as few difficulties as possible, and we spent the time saying what needed to be said and finishing what needed to be finished.

Terry died sedated in hospice six weeks ago. My only regret is for my own loss. Living in the moment and "doing it now" doesn't sound like a bad way to live, illness or not.

Sent by Bruce | 10:38 AM ET | 04-03-2007

Leroy,

So much for presumptions! I believe that nobody is ready to die until they are ready to die. I have seen people ready to die and seen them die before they wanted to. Clearly, you're not ready to die and so it's good that you aren't! Have a great day amongst the cherry blossoms.

Sent by Diana Kitch | 10:54 AM ET | 04-03-2007

I was diagnosed with breast cancer two years ago. A year before that my mother died and my sister almost died from pulmonary embolism at the same time. I had to look at death close up and unblinking. And, I guess, it didn't seem so bad. I don't think I fear death now. But I don't welcome it either. I am forty-seven years old. I have a loving husband, three young children, loving family and friends. They are the ones I don't want to part company with. I feel they need me still. However, if my cancer returns, I will have to ready myself for that lonesome journey.

Sent by Liliana | 11:12 AM ET | 04-03-2007

Dear Leroy,

As a non-patient who lacks your experience, I think you have a great deal to tell all of us, and your courage and candor are appreciated.

Recently you wrote:
"We talk about beating cancer, defeating it, conquering it and so on as if that was an end in itself. But it's not. We're really talking about something else. We're talking about death. That's the real opponent here. We try to stop or stall cancer because it's trying to kill us."

I'm grappling with understanding your statement from a philosophical perspective. To employ the language of poetry, haven't you aspostophized the cancer, giving it an intentional quality of an opponent such as is found in humans? How does this make you feel? I understood that cancer is the name given to a wide variety of biological processes in which the body's own cells proliferate without restraint. Do you believe it's helpful in coping to imagine this disease process as having an antagonistic intention?
You have also referred to as death as the real opponent, but isn't somatic death just the final stage in a process of living/dying that every organism goes through without exception?

If a person conceived of his or her cancer in cellular terms as being really just a part of themselves, and their living/dying each day as also being a part of their lives, I wonder if their coping with disease and mortality would change in any regard.

I'll end with a quote from Shakespeare:

"Out, out, brief candle! Life's but a walking shadow, a poor player That struts and frets his hour upon the stage and then is heard no more."

In truth, it is the same for all of us, the living/dying. The joy and exhilaration as well as the sorrow and despair are perhaps all of one piece that constitute the sum of our perceptions and conceptions of our time on this metaphorical stage.

Sent by Tim | 11:34 AM ET | 04-03-2007

Maybe this is a day to "take a break from cancer." Even a short break can be wonderful!

Sent by LJ | 3:18 PM ET | 04-03-2007

Dear Leroy,
I am sure you get hundreds of emails wishing you well. I have been following your column both on the radio and via email for some time. Although I cannot, no matter how hard I try to, understand what you are going through (since I do not have cancer), your writings provide me with hope and help me to be a better person, and a better and more companionate physician. I am grateful that you have the courage and strength to share so many of your intimate thoughts of hope, fear, and of your day to day life.

I will add myself to the many that send you good wishes; you are an inspiration for many cancer patients everywhere, and to physicians like myself, who wish to understand how what people with cancer experience and feel, so that we can provide care with compassion and empathy. I hope with all my heart that you will do well. My wife and I frequently talk about what you write, as if we knew you personally.

Best of luck, and hang in there!

Fernando

Sent by Fernando | 3:30 PM ET | 04-03-2007

When I was first diagnosed I remember shaking for two days thinking about dying. It seems to me that once the treatments started, death didn't seem so bad. Now that I'm in NEDland and feeling better, death is once again very unappealing. Time really does fly when you're having fun, and crawls when you don't feel well. Smell the Cherry blossoms Leroy.

Sent by Patricia | 4:45 PM ET | 04-03-2007

So glad you don't have to go under the Gamma knife again. And yes, just for this moment, it is a beautiful spring day.

Sent by Mage | 6:50 PM ET | 04-03-2007

I think it's good and healthy to ponder these things. I fear feeling really horrible (I love to feel great... I do not ever take it for granted.)
I fear feeling very nauseous (I love food, and I really really really hate throwing up.) I fear hurting my grown children by dying prematurely - not when they are ready for me to die. I really fear losing my hair again , have lost it twice and do not want to part with it again. I fear losing my sense of humor and optimism. I fear running out of good chemo regimens: they have kept me alive and fairly healthy for seven years with "Stage Four" breast cancer. I fear breaking my husband's heart by dying too early. I fear his dying, breaking my heart and leaving me alone to naviagate these waters ! Wow.....I have more fears than I knew about.... but none of death itself, perhaps the quality of death yes, but not of death. I feel sure there is a good outcome - afterlife? - for us.

Sent by Nancy O | 9:19 PM ET | 04-03-2007

Dear Leroy,
I think you are very brave. My mother was very brave too. She never wanted anyone to fuss over her, especially once she got the cancer in her lungs and brain. Even though she was afraid, she fought till she just couldnt fight anymore. She died in November and I really miss her! I just wanted to tell you to keep fighting... I have been listening to your bog on morning edition ever since my mother was diagnosed.

Sent by dawn | 9:46 PM ET | 04-03-2007

None of us, even in our most actualized moments, can realiably predict the when of our demise. The how, and perhaps the where, but not the when. Even those in the best of health-who die "before their time" or those who ignore all rules and live "beyond their years," or those who are in the wrong place at the wrong time. It seems the trap of the oncology world is to try to know the unknowable. If not for cancer, do we walk out the door each day with the notion of our chance of survival? We should, but we don't. If we did-as we should-we would have a cancer patient's appreciation of time. What are you doing with your today?

Sent by jh | 12:25 AM ET | 04-04-2007

Leroy, I don't have cancer, but I think I know how you feel about neither fearing nor inviting death. My own battle has been with a rare liver disease at first, and now with a failed liver transplant. I was unaware of your blog until reading about it in the Hopkins newsletter "The Dome". Unfortunately the treatments to save my life have left me completely deaf, and listening to NPR is among the things I miss most since losing my hearing.

Anyway, when I was first diagnosed I took great comfort in the fact that although I'm young I had signed up for extra life insurance at work, and if I did lose the fight my family was provided for economically at least. Having that off my mind allowed me to focus on the challenges as they came up, and not fear my potential passing. We too use a blog, both to keep our friends and family up to date, and primarily as an occasional storehouse for our thoughts and fears. By sharing and discussing our feelings, our fears are diminished. In fact, writing this comment on your blog does much the same thing for me.

The final sentence in the Dome article really rang true with me, since it's something that my grandmother said often during the last few years of her long and happy life: I want to stick around here as long as I can, so I can see how it all turns out (or words to that effect). It's not my death that I fear, but the consequences of that death: not being able to see my daughters grow up, or to grow old with my wonderful wife.

I bid you peace (to borrow a phrase).

Sent by Scott | 12:39 AM ET | 04-04-2007

I don't think anyone is ever really ready for death, until the struggle to live is just too great. And then hopefully death comes gently and quickly.

A little more than a week ago, I stayed at the bedside of the last of the grandmothers of my generation in my family as she struggled through her death. Hers was an unexpected and disastrous CVA. When her Living Will and Advanced Directive were brought to the ER, the only thing that would have made her comfortable went against her written wishes. All we could do was to stay with her, let her know that she wasn't alone, and that we loved her and would miss her as she struggled through the last hours of her life.

I learned that you can't always predict what decisions may have to be made in order to keep someone comfortable as they go through the process of dying. And that by trying, you might inadvertantly prevent those around you from being able to help.

As a cancer person, I have had time to get used to the idea of the world continuing on without me. This experience made me see that dying can be like birth in reverse. It was upsetting, and has made me a little afraid.

Sent by Lilly T. | 1:59 AM ET | 04-04-2007

Amen to that. My sentiments exactly. I couldn't have said it any better.

Peace to you Leroy. As usual, you are in my prayers.

Lisa Majors

Sent by Lisa Majors | 9:33 AM ET | 04-04-2007

Your writing is a kind of healing and coming to terms with cancer and the unknown. I like what you said about having things to do before going on the great beyond--sort of like "Miles to go before I sleep..."

You, sir, are courageous and just being there is helpful to all of us coming to terms with cancer. You have a way with words and they echo our sentiments.

Keep trying to look on the sunny side. And you're right on again--walking along the Potamoc is a distraction, but a one that's good for the soul. I am going to bring my grandkids to DC this summer to gather memories later when there is time to look back and remember the good life.

Keep being inspirational for all of us and we'll join the parade.

Sent by Alan | 7:30 PM ET | 04-04-2007

Hi Leroy....I'd like to recommend an article for you...from 1981. I wonder if I heard about it here? Hmmmm...well, if I did or if you already know, that's ok. Anyway, Alice Trillin writes of 'Dragons and Garden Peas', about her, uh, experience with breast cancer. Note this is 1981 Before cancer was beginning to be treated more like a 'chronic illness'. Anyway, it's a very dense article, tightly packed with much thought, insight. Much of it fits with recent discussions of fear of death / fear of dying (I"m the the fear of dying group). I'll give you the citation. If you cannot get it easily, I have a copy, graciously emailed to me by the publisher. Alice passed on maybe 2001. Her husband is author Calvin Trillin.

New England Journal of Medicine, Volume 304, No. 12, p699-701. (March 1981).

Kaye

Sent by Kaye | 3:44 PM ET | 04-12-2007

3 yrs ago I was diagnosed with bladder ca. Cyctoscopies every 3 mos. No big deal. But in 2005 the CA became stage III and I had a total cysectomy, followed by adjuvent chemo. I truly thought I was cured once and for all. But now, after a recent followup ct scan, they have found suspicious lesions on my liver and adrenals. I am shocked, dismayed, depressed, terrified. No one has much to say about bladder ca, except that metasteses of bladder ca are very aggressive. I see the doc again after more tests. The fear I have is overwhelming my life. All future plans are in jeapardy. I'm 77.

Sent by Bill Lamb | 3:58 PM ET | 04-16-2007

Howdy, howdy!

Thank you so much for the thought provoking discussion on yesterday's show regarding the cancer blog. It not only provided us with more information, it inspired a post to our blog, the sCenario (the scenario surrounding the Big C), which we started in early March to help inform our extended families of our new medical journeys.

While the blog is not public, I wanted to share with you the following excerpt:

Well, cancer is certainly a trendy thing to be dealing with right now. On the heels of Elizabeth Edwards and Tony Snow, yesterday's "Talk of the Nation" focused a good part of the show on cancer and the blog, MyCancer by Leroy Sievers, being carried on their website. It provided some interesting links and thought provoking topics.

We've noticed also that the evening magazine shows are beginning to feature the progress made on cancer fronts. Lastly, it seems I read from morning to night, and daily we find websites with more info, or we meet someone with more helpful info, experiences and suggestions and a willingness to share.

There was an interesting discussion during the NPR show regarding the ways people describe their relationship(s) with cancer. In my reading, I'm finding that cancers are like pregnancies -- each one is at the same time similar to many and yet very different from most. How we talk about it seems to have more commonalities: fighting cancer, coping with cancer, managing cancer, dealing with, and, more and more frequently these days, curing cancer (much to our surprise and delight).

I wasn't sure where I stood on the issue, but after some thought regarding the power of language in my life: I don't like the fight metaphor any more here than I did in the boardroom. I feel I'm 'coping' with a lot of things, but not the cancer per se. I don't feel that I'm 'managing' this, as it's clearly in the hands of 'specialists' and 'experts,' and most immediately it doesn't appear that chemo or radiation (things that manage, not irradicate the cancer) will be utilized; so far, I feel like others are 'managing' it, both with and for me. 'Dealing with it' just doesn't seem proactive enough for me...*ponders*

Maybe since I'm being allowed a 'rehab period' prior to an impending surgery, and since my husband is requesting that I don't do anything else but take care of myself, I feel like I'm...Working to Cure this cancer.

Reading, researching, exploring alternatives, organizing, networking...much like many jobs I've done. Although I must say that no previous job that I've had required that I get eight hours of sleep each night, or consume all of these antioxidents, or do things that I find relaxing -- would that they had *sighs*

So, to all of you who have joined us here, or in your calls, emails, thoughts, prayers and well wishes, thank you for being a part of our work to cure this cancer.

Thank you, again, Mr. Sievers! You're in our thoughts.

-dp

Sent by dp | 10:09 AM ET | 04-17-2007