No One Can Help You Decide

 
“You search your heart, your head, and wait for the right course to make itself known to you. Or you simply flip a coin, roll the dice, pick your metaphor. No one else can really help you decide.”
 
 

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

I trust my doctors. I think they are doing everything they can for me. But one of the most shocking things in this whole process was the first time I heard the doctors say, "We don't know." How could that be? I always thought the doctors would know exactly what to do. But they don't.

That's not a criticism. It's just that, in the world of cancer, no one can know ahead of time how you will react to a given drug or treatment. They have studies, they have averages, but none of those things help when it comes down to one individual — when it comes down to me.

They lay out the options, give their recommendations and then ask, "So what do you want to do?" How can you make that decision? There is a relatively new drug that shows real promise in fighting colon cancer. But some studies seem to show that it can cause bleeding in the brain in people who had brain tumors before. Like me. You don't need to know much about medicine to know that bleeding in the brain is a bad thing.

This coming Friday, I'm going to have another brain scan. If it's clean, then my doctors are suggesting that I consider that drug. They think that the chance of bleeding would be minimal. That's the easy part. Here's the hard part. Bleeding in the brain essentially means stroke. That's pretty scary. A stroke on top of cancer would be more than anyone could probably take.

So how do I decide? How do you weigh the risks of shrinking the tumors versus a stroke? In the end — after all the words, the studies, the graphs — you're left alone with a decision to make.

A lot of you wrote in to my blog last week when I found out that my cancer had spread. The notes were all wonderful. I had written that I had to decide between two different types of chemotherapy, each with its own unpleasant side effects. Again, it's sort of unclear whether either will be all that effective, you really don't know until you try.

But all of you were unanimous on one thing. Just make the best decision you can, and then move forward and don't look back. Don't agonize over the decision once you make it. No second-guessing.

I've always been a pretty decisive person. When I was running Nightline, I would try to make decisions right away. Part of the reason was that there was always another decision that had to be made after that, and another one after that one. But those were decisions about journalism, which I do know something about.

These cancer decisions are different. You search your heart and your head, and wait for the right course to make itself known to you. Or you simply flip a coin, roll the dice, pick your metaphor. No one else can really help you decide. And yes, some of these can be life and death decisions.

At least on this one, I have about another week to think about it. But a stroke? I'm willing to gamble, but that's about as high stakes a game as you'll ever find.

 

Comments (Send a comment)

You are a true inspiration that is using the talents you have been blessed with to help others.

Our prayers are with you and your family. You are a true solider of faith and courage to share your feelings and personal story with others.

Sent by Florence Ruiz | 7:43 AM ET | 08-07-2006

I am writing for my partner: Gordon Cannon, who has been battling lung cancer since November, 2005. I just want to thank you for your story after reading it, I literally forced him to read, and it was a gift. Thank you! Albeit his survival has been imprssive - doctors are still amazed with his progress - he is determined to beat this ugly disease. I, as his caregiver recluntantly acquiece, though each day of progress makes me a believer of the human spirit for self-healing. I, too, will pray for you and Gordon, I will anxiously await for your next writing.

Sent by Ron Perez | 8:54 AM ET | 08-07-2006

Here is one clinical trial of "Sun soup" — control group lived an average of 4 months, the soup people lived a year and a half — If I am reading it correctly.

Dr. Sun sells it one line, for $1,000 a month. He wont say what's in it, he patented it.

Sent by Cathy Wilder | 10:02 AM ET | 08-07-2006

One month after my mom started taking glyconutrients, her astonished oncologist cancelled her chemotherapy sessions three and four because he could no longer detect she had cancer! With this potent form of nutrition, her body finally had what it needed to repair itself.

Sent by J.J. Monte | 10:24 AM ET | 08-07-2006

Thank you for your daily comments. Your experience mirrors mine in many ways, and I'm letting you speak publicly for me and the many others who are in similar situations.

The Avastin choice (I assume thats the drug you are considering) is really a rock and a hard place decision. Avastin is also being used with some success for metastatic breast cancer, which I have, and like you I've had brain mets. Even clinical trials of Avastin for breast cancer won't accept people with a history of brain metastases because of the stroke risk. The risk is small, but I worked in brain injury rehabilitation for several years, and have decided that I would prefer not to risk a stroke. I'll stick with more conventional chemo options, which currently seem to be holding my cancer at bay, and try to hang on to my cognitive functions, such as they are, for as long as I can. These are difficult decisions, and there's so much uncertainly and luck involved that it's just a matter of instinct at times.

So go with your gut, and don't spend too much time second-guessing your choices. And very best wishes during this dificult week. Undecided, waiting for information times are really hard. I always feel better when I've got a plan of action.

Sent by B. Nelson | 11:42 AM ET | 08-07-2006

Leroy,

Perhaps it is time for you to look at alternative medicine "in conjunction" with Western medicine. You can have the best of both worlds.

There is a Dr. George Wong, at the Strang Cancer Research Center that uses Chinese herbs (with great success) in slowing down the cancers growth. I have been his patient for over a year.

This type of integrative medicine does not require exclusivity. You can comfortably follow your doctors at Hopkins (who may not have any answers) as well as do something pro-active that won't harm you, and may very well help you.

Sent by Mel | 2:14 PM ET | 08-07-2006

Leroy,

Know that whatever you choose will be the right choice for you. You may be feeling like you have no control in your life. Know that you have the power to choose to heal your mental, emotional and spiritual aspects and there is much you can do to support the healing of your body as well. You have total control over how you choose to respond to this diagnosis and how you choose to heal the non-physical aspects of who you are. I was diagnosed with Stage IV (terminal) breast cancer (metastacized to my lung) five years ago and, today, there is no sign of it in my body. Some think its a miracle. I think I made good choices for myself - with lots of determination and lots of help from other people. Best wishes.

Sent by Maggie McDermid | 5:04 PM ET | 08-07-2006

Wow Leroy, I don't know what I can tell you. Life is a gamble but like you said, some stakes are not worth the risk. Please be sure to compare what percentage the chance of this helping your cancer with the risks of it giving you a stroke, thats about all you can do, and exactly how much would this drug help your cancer? My brother is on a terrible drug for a year to help reduce his chance of reoccurance by four percent, I don't think that small a percentage is worth it. We would love to have the doctors tell us exactly what to do and what we can expect but unfortunately that's not possible. In the end those dice have to come rolling out our hands. I pray God will come to you and give you the right answer.

Sent by Sherry | 5:06 PM ET | 08-07-2006

Today, I also started a new cycle of Fulfox 6, apparently a regimen often provided to advanced colon cancer patients. Previously, there were six months of pancreatic cancer mixture called Gemzar with mixed results. My particular disease is ampullary cancer, a rather rare type of carcinoma for which clinical studies are not common.

Reading your account full of both doubts and hopes presents a balanced description of what a cancer patient lives. We don't know what lies ahead and have to accept that it is a journey with an unknown destination. Perhaps I can learn to appreciate the former while not obsessing about the later. At least that would be a more dignified life.

Finally you have a gift for writing. And while that may not fulfill all of your hopes, it is still a precious skill. Ask any journalism teacher!

Thank you for your courage and sacrifice to bringing your story to us.

Sent by Christopher Barry | 7:02 AM ET | 08-08-2006

MSG: Mr Siever

I guess I should not complain. I had had a rare form of Leukemia for the last twenty-two years. When I was DX, my MD mentioned that if I would have selected I could not picked a better one. Of course, I would have selected NONE. During my existance with this thing I had had a huge number of medical procedures. With the years I has deteriorated (aging too). I tried to forget about it. In the mirror I look normal, but you reminded me again that sooner or later this is going to get us. I used to be prepared for the inevitable but the longer I last the more I try to forget.

I was fortunate to have the time to raised the children, get my degrees, work and so on. My pain is now back and the torture continues.

Have fun while living!

Sent by Maria Del Carmen Balbuena | 7:03 AM ET | 08-08-2006

I have received one biopsy on my cervix (negative) and now must go for a biopsy on the right ovary. This week is the first visit with the gynecologist/surgeon. It's Wednesday.

Meanwhile, my stepsister has breast cancer and just had surgery two weeks ago and now they've discovered that they missed some of it — and that it's a very aggressive cancer, so she may do some alternative protocol. She doesn't know — some kind of trial group.

Also, I'm from Alaska, so the news about Susan Butcher hit hard. I'm traveling — in Seattle on my way back to Alaska.

I haven't read your blog yet but thought I'd just talk for a second before I start reading.

Thank you for talking about it.

Sent by Michele Miller | 7:05 AM ET | 08-08-2006

Thank you so much for your writing. As a double (breast cancer and uterine cancer) Stage IV survivor, it has been hard to find people who are feeling and thinking the same things I am. Most have a chance for survival (thank God), but I am having to make life and death decisions. Your blog has made a real difference in my daily life. You are in my prayers I am pulling for you.

Sent by Sue Snyder | 7:06 AM ET | 08-08-2006

My heart goes out to you. I am a seven-year breast cancer and now a two-year bladder cancer survivor. I followed most of my doctor's advice-

But, besides prayers, I offer you this advice:

Go to that special place inside you, you know that place, often called the heart of hearts, your soul, your gut, your intuition. That place that within the time it takes to blink the eye, the heart to pause one beat then jump, you know, you know that the stranger you are looking at for the very first time is you, the house you are standing in right now, is home.

If you feel that "click" in that special place, than youve made the right decision. Don't be afraid. Just focus on all of the love that is rising up and surrounding you.

Sometimes in a person's life they live a year in complete winter. No spring, no summer, not even fall. All is underground and frozen and appears that hope has left our hearts. Be strong and do not be afraid. Things will be hard, excruciating maybe, but never have fear in your heart. And one day, the rhythm of life will pick you back up and float you in the mighty river of living, and spring will come, and summer will shine upon you, and autumn will silence you, and winter will come once more and you will remember everything, everything, and love will bear you through the coldest darkest days until you come through it once again.

Sent by Shawna Koder | 7:08 AM ET | 08-08-2006

Thank you for being willing to share so frankly. When I visit with someone in a condition like yours, I try to keep the conversation focused outside the room - do you think the Giants will ever start winning? - rather that holding a Grand Inquisition. From your words, I have a better appreciation of what others in your situation must be thinking about.

Sent by Ruth | 7:10 AM ET | 08-08-2006

Thank you. You have done what both my husband, the patient, and I, the caretaker, agreed should be done. There needs to be a nakedly honest guide to this process to help those blundering along the same path. Time after time you have said it just right, reading doctor's faces, reading the faces in the waiting room, the waiting, the sweating, the pain.

Sent by Alice Martin | 7:11 AM ET | 08-08-2006

I cannot really read your blog properly. It comes too close to what I went through with my fourteen-year-old daughter Sonia. She used to write a blog as well. Sonia died before she turned sixteen. But I do read a few lines here and there.

One thing I read brain bleed on top of cancer... that is what happened to Sonia... that was the time we decided to let her go. This is actually the hardest thing anybody can ever have to do. In fact, harder than that is to live with letting your child every moment. Rest of your life and hope— it would be too many more breaths I have to take.

Another thing I read on your blog was doctors' saying "we do not know". We think and hope that doctors "know"— actually, doctors are people like us. Many many things we want them to know, just because we want them to know. It does not happen, it does not work that way— truth is their vesting in you the patient is less than your own vesting in you. So do not undermine your judgment, your instinct. Doctors are not as powerful as we wish them to be. We wish them to be almighty because our life depends on them, or so we think. I would say, do your homework. Rely on yourself as much or more than on on "others". After all, doctors play with "large numbers" so if 70% people make it- quite good- but for you, you are it. You do not have the option of moving on to next patient. Your doctor does.

I am not against doctors. I want people to understand doctors are limited and not as vested and as capable as we wish for them to be.

Sent by Beena Bawa | 7:13 AM ET | 08-08-2006

Please read The China Project by Dr. T. Colin Campbell. Thirty years ago, he was a meat and milk man. After macro research in rural villages and after research under a microscope, he found that cancer literally feeds on animal products in a person's body.

Religious and non-religious both agree. If you go to the culinary academy at Shelby, N.C. you'll find out how to eat tasty food that is good for you.

I juice carrots, beets, grapefruit, apples, beets, cukes and it helps me tremendously. These live juices fight cancer and are much more easily assilimilated into the body than solids are via poor digestive systems.

I bike (1 hour), swim (1 mile)... just tonight. Six years ago, I could barely get out of bed, I was so ill. I'm not kidding. I was #1 in my class at USMA for the best performance in physical education testing too fifteen years ago.

Sent by Debra Smith | 7:20 AM ET | 08-08-2006

Hi Leroy,

I was traveling back to N.Y. the other day and caught your broadcast on NPR. I am a Physician Assistant student at a program in Queens and am very interested in the field of oncology. I'd love to keep in touch. Your candor is refreshing your courage is humbling. Thank you!

Sent by Barbara Van Driel | 1:46 PM ET | 08-08-2006

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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'

My Cancer will be updated Monday through Friday with posts and commentaries from Leroy Sievers. A journalist for more than 25 years, Leroy has worked at CBS News and ABC News, where he was the executive producer at Nightline. You can follow his story through this blog, his weekly podcast and his monthly series on Morning Edition.

 
 

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