Getting Hit, but Not Feeling the Pain

 
“I still haven't decided whether or not to try more chemo... No one knows how effective it will be, if it is effective at all. It all comes back to that question of, 'Is it worth it?'”
 
 

Some years ago, I was covering the election in Chile in which Pinochet was thrown out. One night, the army turned on the press corps and beat many of us badly. It's a long story, and I won't bore all of you with it, but I still remember one funny thing about it: At one point, I was being chased by three soldiers who were hitting me with clubs. I could feel each blow, but they didn't hurt. I guess it was the adrenaline and shock. Of course, once it wore off, it hurt like hell, but at the time, I remember thinking how odd it was to be hit and not feel pain.

Well, that's sort of the way I'm feeling these days. I think after a while, you get bad news, you feel the blow, but the pain doesn't come right away. I guess our bodies are still trying to soften the blows. Last Friday, I got more bad news: another new tumor on my spine. Now no one seems particularly concerned about this one. I am going to have radiation on the other spinal tumor anyway; we'll just zap the new one at the same time.

But it's clear that my cancer has taken a turn. It's broken through the chemo and it's growing and spreading. I still haven't decided whether to try more chemo — a different mix of drugs this time. No one knows how effective it will be, if it is effective at all. It all comes back to that question of, "Is it worth it?"

In the meantime, we're going to attack the tumors that show up in dangerous places: my spine, my brain, if one comes back there, and I'll find that out this week, too. Otherwise, the tumors in my lungs are in places where they really can't do a lot of harm, so they are lower on the priority list.

From the beginning, I had a pretty good idea of how this was going to play out. I always knew the clock was running, but now I think I can hear it. I am feeling some pressure to get a lot of things done. This doesn't mean that my death is imminent, but I think my doctors and I all have the sense that things are going to start happening faster and faster.

But in the meantime, I have most of my holiday shopping done. The Christmas tree is here, just waiting to be decorated. And it's a beautiful day. I think it's in the 60s in Washington — and it's December. So I know the blows will continue to come. I know that soon I'll feel them. But in the meantime, I have to go brave the post office and then just enjoy the day. The pain from those hits will come soon enough.

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Hey Leroy,

Your strength is an inspiration. I'm just starting to feel the pain of my hits, diagnosed in August. I've been wondering why I'm so weepy, NOW, and your theory makes sense. Thanks for showing how a person lives with the hell that is cancer.

Sent by Katie | 9:49 AM ET | 12-19-2006

At times, I feel like I am running on empty. As the world continues spinning around us, there are no words, just thoughts, feelings and emotions so deeply embedded in your heart and soul and yet here we are running on empty. A bitter sweet symphony.

Sent by Marianne Dalton | 9:52 AM ET | 12-19-2006

Leroy... you are an amazing model of courage. I am sorry about the latest news and I thank you for the reminder to us all to seize the day, anyday, everyday.

Sent by Terry K. | 10:00 AM ET | 12-19-2006

Dear Mr. Sievers,

Your posts are the first thing I read every morning.

Please accept humble thanks for your willingness to share your courage, your fear, your thoughts I wonder if you know fully the power of your words.

May you feel a reader's prayers when you need them most. May your days be filled with courage, grace and strength. May you feel God's hand on your shoulder.

Sent by R. L. Janus | 10:01 AM ET | 12-19-2006

I guess it come down to what we consider is a good quality of life. I decide months ago with my oncologist that my I would much rather have a good quality of life over being sick with all the drugs just to keep me alive. I was at the oncologist today and I was told that my condition is stable. So as you did I also enjoyed a beautiful day. Enjoying life for today and making those important decisions when we cross that bridge.

Sent by Kris Worrall | 11:14 AM ET | 12-19-2006

Dear Leroy,

I have been with you from the beginning and have wanted to comment but could not come up with anything meaningful to say. For me, the most difficult aspect of being a physician is when all the years of training leave me with nothing to offer, nothing to say, only to be a friend. I continue learn from the patients I have had the opportunity to interact with. Thank you for your honesty and sharing your life with the rest of us. You have touched so many lives. Enjoy your mai tai on the beach.

Sent by Jeff | 11:15 AM ET | 12-19-2006

Leroy,

You said it all in your next to last sentence — "enjoy the day!" When you get right down to it, all any of us have at any instant in time is that instant, so it is important to live each day to the fullest extent possible.

Well look forward to hearing all about your upcoming Hawaii adventure.

You are in a lot of folk's thoughts and prayers.

Sent by Art Ritter | 11:17 AM ET | 12-19-2006

"Is it worth it?" is a question we all will face. And you are the only person that can answer it. A member of our Support group faced the same question. The following poem describes our last meeting together:

Six of us sat in a circle

Talking about David, with David.

Too much radiation, more and more chemo,

Which way to go, what to do next?

Ours to advise and support,

His the decision to make.

Continue chemo? Open Wound Clinic?

Any new treatments to try?

And then, with a thunderclap of clarity,

Came a quiet whisper of wisdom!

It's all right David,

It's all right to let go!

David went home, Hospice came to him.

Family and friends, he in his favorite chair.

Go gently, dear David,

Go gently into that good, peaceful,

healing, night.

My wish for you, Leroy, is that you make your choice, whatever it is, with wisdom and acceptance.

Sent by Don Winslow | 11:19 AM ET | 12-19-2006

Keep bobbing and weaving... just think of how many fight Ali one after taking a serious beating... anything is possible.

Sent by Brit | 11:20 AM ET | 12-19-2006

Thanks for sharing a painful set of reactions — for the reminder that shock is still the initial reaction from those of us on the journey through cancer treatment and diagnosis. As hard as some of your life story can be to read, your courage in sharing it deserves our support. When you visit Hawaii, enjoy a sunset for all of us who can only share the beauty with you in spirit. Hope the next treatment brings you what you are looking for and need.

Sent by Helen | 11:21 AM ET | 12-19-2006

Yours is a very apt analogy. I feel the blows for you, even though we've never met. It's hard to imagine how one will cope when death moves near. I like to think that I'm not afraid of death, but I've found out in the last three years that my body is. It doesn't know about the continuation of consciousness after death. I'm sure that many people continue to write to you about how much your blog means to them, how brave you are to share your experience and your inmost thoughts with us. You are — it goes without saying.

I know from having meditated in huge groups that the intentions of a large number of people are a powerful thing. Your blog family may not be able to arrest the cancer in its tracks, cause spontaneous healing, cure you. We can, however help you to experience the support that we all send. It should come as no small satisfaction to you that your possible professional swan song this blog and the Discovery program, will have helped uncounted people dealing with cancer in any way by putting a human face on it, showing a brave and open way to cope with it, and how to support and be truly there for someone dealing with it. The pebble that you dropped into this little pond is going to continue to ripple... way across the sea.

Sent by Nancy K. Clark | 1:10 PM ET | 12-19-2006

Dear Mr. Sievers,

I am a medical student. I read your blog religiously. For one thing, it puts things in perspective for me. But beyond that, it made me realize that while we only encounter the disorder that the patient suffers for the 10 minutes we may round on him or her in the morning, the patient lives with it all day, everyday. It was an abrupt call to reality for me. Thank you for your incredible insight. You can be sure that it is affected at least one future caregiver.

Sent by Jaini | 1:11 PM ET | 12-19-2006

Leroy,

It never ceases to amaze me how we can continue our everyday activities and have cancer. It's like two lives in one. You're better at verbalizing than I am, but I think you get the message. I go shopping for gifts, allowing that I only have a limited amount of time that I can stand without back pain kicking in, and feel sort of normal for a brief period, I look at other shoppers and wonder if they are normal or if they too have some secret that doesn't show. Last week I was in Goodys ready to check out my purchases and while standing in the checkout line, some woman was holding up the line for some unknown reason and I thought to myself if I have to stand here much longer I'm going to pass out. I of course couldn't hurry her up and I thought about saying, take me NOW, I have cancer and can't stand much longer, but I wouldn't do that either. I could have walked out but after doing all that shopping I wasn't going to start over again at another time. My point is cancer makes you do and think so differently about everything. I was watching that new show Identity yesterday, and my husband says to me jokingly "what is your identity" and the first words that came out of my mouth was "I am a cancer patient." It took him back for a minute, me too. Leroy, I'm sorry for rambling on. I understand how you feel completely and I hope knowing this helps you in some way. Hang in there. This is the best time of the year.

Sent by Ruth White | 1:14 PM ET | 12-19-2006

I, too, have wanted to write before, but have always decided my comments were not especially noteworthy. When my husband and I went through a similar time, it seemed important to affirm that while we are alive we have a responsibility to be who we really are, true to ourselves. For us, that meant remaining open to friends and family, and offering help as well as accepting help. You have been so gracious in including all of us, and have remained emphatically who you are. Thank you for that! We didn't go to Hawaii, but we did buy a kayak! Go for it! I'll be thinking of you!

Sent by Candace M. Harrington | 2:16 PM ET | 12-19-2006

This feels so unfair. You have colo-rectal cancer you're supposed to have a long gradual decline. I have pancreatic cancer I'm supposed to go quickly. You are writing about your cancer, allowing us to come on your journey vicariously. Your journey can't end before mine. Not fair! I know you aren't going anywhere too soon, but it will be too soon! No matter when it is. So many of us turn to you to express what we are feeling and, often, fearing. Don't go down that last path yet. I'm not ready.

Sent by Stephanie | 2:22 PM ET | 12-19-2006

Leroy,

Please give the chemo a try. I'm on my third regime and this time it worked. I'm in remission. I don't think any of the chemo was as horrible as that first chemo. The regime I'm on now is very tolerable.

There are so many choices. Talk with your doc and tell him you want to try something that lets you live while you fight.

It's way too early to give up!

Sent by Karen | 3:22 PM ET | 12-19-2006

Hello Leroy,

At seventeen years of age, I had learned a valuable lesson. At fifteen, my mother had passed away from a brain aneurism while my father began to suffer from the horrors of Type one diabetes. He hung on and hung on exhibiting a strength I've never seen before. In my seventeenth year, my father must have heard the "Go to Hawaii" call. He and his best friend went to Las Vegas as my father was a performer and this was his life's joy. I silently questioned his decision thinking it would be more prudent to stay home in the event something should happen. At the age of nineteen, he passed. There is no doubt in my mind that he hung on to make sure that I was of legal age and on the right road. As years went by, I thought about that trip to Las Vegas: how he must have felt, what he would face upon his return, and hoping above all hope that he enjoyed every single minute. I believe the Las Vegas trip gave him the calm and wisdom he required to enter the next phase of his life and all of the unknowns that come with it. And now, while I am on my journey, I look to that trip and I know that all will be well no matter what the outcome because I will do the same thing. My father taught me well. Leroy, you will be OK.

Sent by Kathy | 4:22 PM ET | 12-19-2006

Dear Leroy,

As someone who has experienced cancer as a caregiver and later as a patient myself, I will say: It's not over until it's over.

Only you can decide what further course to take, and to decide you have to look deep within yourself then take your leap of faith.

I am one of many here rooting for you, with thoughts and prayers, and wishing I could do more.

Sent by Lilly T. | 1:41 PM ET | 12-20-2006

You've come through fire before, Leroy, and that makes you such an astute and startling reporter of the journey you've had with cancer. I am enjoying the thought of you with the Christmas tree, the gorgeous weather, the idea of Hawaii, and all the doors still to open in your life. Bright blessings to you and to all who love you!

Sent by Sarah | 1:45 PM ET | 12-20-2006

Thank you again for writing all of this down. As difficult as it is to hear this news from you, I really appreciate how you're being so attentive to your experience and documenting your cancer.

You're writing about realities that are terrifying, but for me, are starting to feel less scary simply because you're articulating them so clearly and with so much compassion and strength.

I don't know how to thank you except to leave a comment for you here and let you know I am listening.

Sent by Grace Talusan | 12:31 PM ET | 12-21-2006

Since May 2003 I've been a breast cancer survivor. My husband now has pancreatic cancer. It's locally advanced. We are in a clinical trial at a good place.

I'm interested in connecting with Stephanie who wrote on 12-19-06. Stephanie, please write to me if you can.

I also want to find out what is happening in Europe in the treatment of locally advanced Pancreatic cancer.

Thanks, Leroy. For this blog and the opportunities it affords.

I've had the intention of adding NPR to my will for a long time. Now, it's certain that I'll do this. When I've needed a friend, it's there.

Sent by Penny | 4:22 PM ET | 12-21-2006

Hi Leroy,

Ten years ago I was diagnosed with breast cancer with mets to the spine. I endured a bone marrow transplant and massive radiation and was told I had 18 months to live. I decided that wasn't good enough because I had a ten year old daughter with cerebral palsy that I had to be here for. I also had a strong intuition that I would live and that I needed to listen to my body and work in partnership with the docs. I never pay attention to the numbers the docs give I refuse to die on their schedule. This year I saw my sweet daughter graduate from high school. Maybe the right treatment is a combination of chemo, radiation and tapping into the wisdom of our bodies.

Sent by Kate Sullivan | 1:08 PM ET | 12-26-2006



   
   
   
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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.

 
 
 

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