Well Leroy, as I am just now TODAY feeling the side effects of my "latest" round of chemo — that being the drug called "taxol." I am feeling not like a mack truck ran me over as my oncologist said I would be feeling within 48 hours of the poison taxol, but rather I am feeling as though the mack truck ran me over and left me with every bone in my body crushed and waiting to die. Yes, this poison war we are battling takes its toll in some many ways, physically, emotionally, but like I have blogged before I refuse to let it take my soul... not yet... I have too much to accomplish... as we all do... so please, Leroy, do not give in yet... take these poisonous drugs like the man we all know you to be!!

Sent by Marianne Dalton | 2:24 PM ET | 01-11-2007

Dear Leroy,

We are living in parallel universes right now. AS I have written before, my situation is almost uncannily similar to yours in time frame and decisions and events.

I, too, have had a break from chemo and a set to go back on next week — a new regimen from the last chemo, which did so well for awhile, just stopped working as well — and left me with residual neuropathy in my feet that drives me crazy. Anyone have any suggestions out there for alleviating some of that pain?

I also have had to start intrathecal chemo to deal with mets to my cerebral spinal fluid, which has given me severe diplopia (double vision). Between my tottering little feet and my double vision I feel like I'm channeling my dear, departed Grandpa during the last few years of his life. I guess you don't actually have to get old to experience the effects of old age!

Even though I have active cancer, this break has given me some semblance of what it used to be like not to feel sick all the time — and what an indescribably glorious feeling that is, isn't it?

I will proceed with the new chemo — I'm not ready to quit yet but I have seriously considered how I might arrive at that decision to just say, "OK, that's all folks."

I wish you ALL the best love and support and guidance in making your decisions, and hope you can find ways to deal with the onslaught that the new chemo will bring. It just sucks, doesn't it?

I want to thank the readers who sent links the other day in their comments — one from the priest about suffering and one from the doc who became a patient. Both were wonderful. This blog of yours, Leroy, is your legacy to humanity. The strength it takes to do it, the compassion with which you do it, the community you have created. God bless you! And good luck with the new chemo.

Sent by D.B.C. | 2:52 PM ET | 01-11-2007

When I was also a cancer rookie, I thought that the doctors would just tell me what needed to be done, and I would do it, and that would be that. Now, being a cancer pro, I find the decision making the most difficult part of the process. Although I appreciate having a certain amount of control over the treatments, it can also be nerve wracking. Sometimes I feel like just tossing a coin. Really that's all were doing anyway.

Sent by Patricia | 2:54 PM ET | 01-11-2007

Thank you for sharing every day. Your openness and honesty bring a new perspective to all cancer "people"! I am experiencing a lovely swollen arm due to damaged lymph nodes — thanks to chemo. However, I see I have very little to whine about after reading your daily blog.

It is all about perspective. We keep our hearts open to everyday ups and downs, forgetting the small worries and rejoicing in vivid small glories.

I am going to try some different remedies for my arm — acupuncture, herbs, vitamins. Whatever you decide to do, we look forward to hearing from you and know you are making the most of your day.

Sent by Karil | 2:59 PM ET | 01-11-2007

Dear Leroy,

I hope you do try the new drugs. Although I understand the choice between quality vs. quantity, I'm selfish and want you around for as long as possible. I read your blog every morning; it helps get me through each day. Your feelings are always so close to my own.

My choice (right now) is for quantity as my children are 13 and 16, I want to be around until they are at least 18. But, sometimes when I'm feeling really bad I have considered stopping treatment, but then I think about my children so I go on.

Just know that you have many people praying for you. You are an inspiration to us all. Thank you!!!!

Sent by Sherri | 3:06 PM ET | 01-11-2007

Leroy,

Thanks for sharing your story with all of us. I look forward to reading your entry every day. After going through some similar treatments as you, I've learned that I don't like all the statistics thrown at the patient. Things like 40 percent chance of living x number of months more... or, "on average, this is what happens..." can be a downer. I know the medical field has this information to help the patient make a decision. This kind of information is also everywhere on the Internet, so I stay away from that, too (except for your blog).

If you take the treatment, I wish you the best to prove the statistics to be wrong. Don't let those numbers stay in your head.

Do what's right for you. Take care.

Sent by Jenny G. | 3:58 PM ET | 01-11-2007

Leroy,

I know this is such a difficult question. I wrestled last year at this time, and the effects of the chemo I did were not as severe as what you describe, so I can't imagine the questions you are asking. Many people felt they had a duty to tell me what to do. I hope you don't get too much of that.

I haven't been in your position. I've had cancer twice, but both times in early stages so I didn't have to wrestle through whether possibly just a few more months would be worth the possible severe side effects. But I have read enough of your posts to tell you that I have confidence that you will make the best decision for you.

Thank you for your honesty and your generosity with your experience.

Sent by Kelley E. | 4:00 PM ET | 01-11-2007

Leroy, again you've highlighted that none of our experience prepares us for this other-worldliness of cancer. For most of our pre-cancer lives, we've been used to making choices based on a desire to optimize our outcomes. Cancer treatment choices force us to deal with both the uncertainties in outcome and learn/accept an unfamiliar decision-making process. Thank you for sharing your thoughts as you work through your decisions. I am sure that you lead many of us by example, as we come to face similar circumstances. I hope that others comment on how they came to make their own difficult treatment decisions also.

Sent by Sheara | 4:16 PM ET | 01-11-2007

Leroy,

I started following your story after I heard your editorial on Morning Edition the day after Christmas. It struck a chord with me.

See, my father was diagnosed with Stage IV Metastatic pancreatic cancer on December 15, 2005. No, surgery, no radiation — chemo was his only option.

After six months in a clinical trial that seemed to work — for a while — the doctors changed his treatment to something similar to what you are now faced with. The diarrhea, nausea and facial blemishes along with extreme sensitivity to cold temperatures are things he's had to deal with since early August. The sensitivity to cold is the only lasting effect — everything else seems to come and go.

I just got a call at 12:15 and the chemo is keeping the tumor in check. The CT-scan taken this past Monday showed no change over the last two months. In those two months he's celebrated his 60th birthday, enjoyed Thanksgiving and Christmas with family, and was there to see his granddaughter turn 1. Tonight he leaves for two weeks in Florida.

It's my father's faith and positive attitude coupled with the chemo and his doctor's advice that has helped him beat the odds. He was given 6-8 months to live — Monday it will be 13 months and he's still going strong.

I'm so proud of my dad! And I'm so thankful you're able to share your thoughts and feelings with so many of us that are fighting along with our friends and love ones every day.

Sent by Bryan | 4:20 PM ET | 01-11-2007

I know exactly where you are at. However, I started my chemo with the worst drugs, like they are talking about for you, and now I got the news the other day that the new drug treatment will probably be the one I can stay on for the rest of my life. Not exactly what you want to hear, but I know that this is the fight I am in and it is what I need to do.

Sent by Steven | 4:25 PM ET | 01-11-2007

Leroy —

You are a man of courage and strength. The more I get to know your character, the more impressed I am.

Life is precious, so although it will be "a challenge", please consider the new drug treatment plan. You can always say, "I quit," but you can't put the toothpaste back in the tube. Go for it.

Sent by Laura | 4:27 PM ET | 01-11-2007

I am just about at the same place with my cancer. This is, I think, the hardest decision I have had to make. How do I tell you how much this column means to me? You are able to say what I cannot express.

Sent by Clarke | 4:28 PM ET | 01-11-2007

Larry,

Have you given up on the idea of a trip to Hawaii? It's easy to get caught up in the "next treatment plan that might work."

I chose the Quality route and haven't regretted that decision.

Sent by Cindy | 4:32 PM ET | 01-11-2007

Leroy,

I am glad for you for your relatively good news! Doesn't our perspective of "good news" change as we go along on this journey? It is truly more relative.

I feel your challenge with the decision-making. It's one no one can really make but you, once you process and weigh in all the factors. And then it's really still hard to see a clear path, an obvious way to go, and it feels like making or taking the best guess rather than the definite. I think this is one of the more difficult things about going through cancer-the unknown outcomes from our decisions regarding treatment. But I reflect back to your recent column that make us all think about the year wed been through, and what we'd do differently if we knew how it was going to end before it began. I wish you had that perspective available now.

Praying that the decision becomes clearer to you, and that you have peace with it.

Sent by Karen | 4:42 PM ET | 01-11-2007

Every morning, while drinking my first cup of the day, I sit at the computer and read what NPR has to offer. I start with the daily headlines, the growing numbers of innocent victims of genocide, war, hunger, disease, poverty. And then I move on to this blog. I am not and have never been the "victim" of cancer and for that I am grateful. I'm certain this will be interpreted by all as heartless, but amid all the death, destruction and sadness that comes with being born at the wrong time in the wrong place, I question the morality of expending unknown amounts of resources extending the life of one adult "victim" who, it appears, has lived a privileged life up to this point. Am I alone when I ask this question?

Sent by Pam | 4:57 PM ET | 01-11-2007

I'm so glad to hear that your worst fear of new tumors wasn't realized, and that you don't have that added burden to cope with. Lord knows, your decision will be hard enough without new tumors to deal with. That being said, this is an area where statistics only go so far. Quality vs. quantity is eventually going to look most of us in the face. You've just gotten to that place... maybe. I wish you clarity of mind in making your decision, and peace of mind after you've chosen the fork of the road to travel.

Sent by Nancy K. Clark | 4:59 PM ET | 01-11-2007

As a cancer rookie myself this past year, I was overwhelmed by the choices that patients must make in treatment plans. Sometimes you just want your doctors to claim the authority the uninitiated assume they have, and tell you what you MUST do. Having to decide yourself, with shadowy results expected either way, is both unimaginable and an opportunity to seize a small bit of control in an otherwise out-of-control time. I decided to go with my gut, once I could quiet my mind long enough to listen to it. I have been (mostly) at peace with my decisions. I wish the same for you. Thanks for sharing your thoughts with so many.

Sent by Julie | 5:01 PM ET | 01-11-2007

In the "something else" category: A couple of years ago I heard about a cancer treatment that keeps new blood vessels from developing, which, in turn, keeps the tumors from growing and allows them to be treated (either by the immune system or by radiation/chemo). The media reported the treatment as a failure because the tumor regression measurement was based on chemo standards, where only dramatic reductions in tumors are considered promising.

I do most of the research for DHs cancer (melanoma). Quality of life is more important for him, so I would be looking for the long-shot miracle cure (Phase I or II trial). But ultimately, he's the one who has to make the decision, and as you point out, there never is a clear answer.

Sent by Erica Carter | 5:15 PM ET | 01-11-2007

I would like to ask a question. Is it useful to continue chemotherapy when the cancer further advances by metastasizing in the liver?

Sent by Irene | 5:19 PM ET | 01-11-2007

Leroy, Glad to hear your "not too bad" news. I really appreciate your candor and your ability to share yourself with the world. I come from a family that has lots of cancer in it and definitely understand scanxiety!! Wishing you a clear mind as you make your next move.

Sent by Brooke Rogers | 5:21 PM ET | 01-11-2007

Leroy, you're so right about how one's perspective changes over time. Cancer patients and their loved ones get really facile with relativity. "Well, it could have been worse!" we tell ourselves when delivered bad or neutral news. And, indeed, it (or "the alternative", as my husband used to say) would be worse.

Regarding treatment, it sounds like you're talking about Tarceva as one of your new drugs. My husband took it for his pancreatic cancer and I believe that it gave him another good 3 months. The acne rash wasn't too bad to deal with either. He even joked about being plagued with acne in his 50s that he had escaped as a teenager! The more rash you have, the more likely it's working.

All you can do is go forward with hope and courage into the blank future. There's no turning back now. You will know when you've had enough.

Best Wishes, my friend.

Sent by Marilyn Morrissey | 5:32 PM ET | 01-11-2007

Leroy — I decided when I was diagnosed that I would also take a "balanced" look at my treatment options. When my only child (daughter) had her son (first grandson) in Sept., that decision flew out the window. I will fight for every minute of life so that I can see him grow. You'll make the right decision for you — God bless you.

Sent by Robin | 5:35 PM ET | 01-11-2007

Dear Leroy, I'm writing in response to your January 11th piece, "A Changed Perspective." Like always, I agree with your thoughts about how your perspective does, in fact, change over time. I've been fighting my cancer for about five years now. In some respects that seems like a long time; in other respects, perhaps it doesn't. I feel fortunate, as I've outlived the statistics for a person with my type of cancer.

Without going into all the details, I have a very rare cancer called pseudomyxoma peritonei. It is believed to have originated in my appendix. Unfortunately, it has metastisized in my lungs and throughout my belly. After three abdominal debulking surgeries early on, I have been on chemotherapy now for over three years, along with a month long dose of radiation therapy to reduce the size of one of the tumors. Because of the rarity of the cancer I have, there has not been a chemo regimen established for it.

I, and others like me, have been treated with colorectal chemo regimens with a fair amount of success. I'm telling you all this because from reading your blog today, your description of the new chemo regimen you are contemplating, sounds a lot like one I've been on for quite a while. It sounds like you're contemplating Camptosar and Erbitux. If so, I really just wanted to tell you that the side effects, while not pleasant, were very tolerably for me. I continue to work and live an active life for someone with cancer. The side effects of Camptosar were more bothersome than Erbitux. Camptosar did cause me nausea and I did lose my hair (but not my beard - weird). The side effects of Erbitux have consistently been an acne-like rash mostly just on my chest, upper back, and a little bit on my face, and has really not been a problem for me. I've had weekly infusions with this regimen for about two years, so I became quite use to it over time. I really only felt crummy for about one day after the infusion.

The good news is the drugs have maintained the tumors in a stable condition — no new tumors, and no substantial changes in size. Interestingly, about a year ago, my Oncologist and I decided to just try the Erbitux by itself, thereby eliminating the harsher side effects of Camptosar. Since doing this about a year ago it appears that the Erbitux is working by itself in maintaining tumor stability. If, in fact, these are the drugs you are contemplating, I really do encourage you to try them. They really were not as bad as the others I tried before this (like 5-FU and Leucovoran, Oxaliplatin and Xeloda). Leroy, I truly know first hand what you are going through. It's very tough stuff, and as always, I wish you my best thoughts and prayers. Feel free to respond to me if you want to talk more.

Sent by Jeff Beach | 5:46 PM ET | 01-11-2007

My heart aches that you are having to make such a decision, Leroy. Whichever choice you make, know that I and many others are hoping and praying you will feel better than expected & be at peace with the decision.

Sent by Doris | 5:48 PM ET | 01-11-2007

Leroy, please try the new drugs. It is suicide not to. Sure you will feel terrible for days, but you may also have days where you feel okay. My husband was diagnosed with pancreatic cancer 11 months ago and is still here. I can't bear the thought that someday he won't be here. Every day counts.

Sent by Jacqueline Roose | 5:50 PM ET | 01-11-2007

Leroy — were the scans able to reduce your spinal tumor? Was the treatment worth the experience? I've only done chemo, but the radiation treatment seems even more surreal to me. My mother received radiation treatment for breast cancer and she said the she always felt like a piece of bacon, frying in the microwave. She swore that she even smelled bacon and could taste it in her mouth. I have some bacon shaped Band-Aids that I will use when I get radiation.

To D.B.C above about relief from neuropathy — I was on Oxaliplatin for 4 months. The cold sensitivity in hands/feet turned into neuropathy and I couldn't feel my feet and hands at all most of the time. At the recommendation of another patient in the clinic, I tried acupuncture. After 30 minutes of what I call the "electrified porcupine" treatment (I also had a mild electrical stimulus applied to my feet), my feet were so ticklish that the acupuncturist couldn't hold me still while he attempted to manipulate and massage my feet. My fingers are also a bit better too. You might consider giving it a try.

Good luck.

Sent by Bob Maimone | 6:03 PM ET | 01-11-2007

Thanks... I have gone thru radiation and several sets of chemo (weapons of mass destruction) however, I am now in relapse... so the drugs stopped and we are attempting to block multiple sources of testosterone. As a result, I feel good, my hair is back, but I know there will be some hard calls around the corner. Day at a time.

Sent by Bill Kennedy | 6:19 PM ET | 01-11-2007

To Pam, I certainly hope and pray that you never do become a "victim" of cancer, or any other long-term disease or disability for that matter. I suspect, however, that if you ever do, your perspective may change. It is so very easy, from the perspective of good health and perhaps being born at the right time and in the right place, to have the luxury of viewing the world in such lofty concepts. But when one is in the thick of battle for ones own life, things look considerably different.

Sent by Mark | 6:21 PM ET | 01-11-2007

Leroy,

I follow your progress, and I mean progress, as we are all learning our lessons today... My husband just came in and sad, "Why are you looking at that?" I replied, "Because I need to." You know, I need to — you are so loved by so many — what else matters?

Sent by Patty | 11:52 AM ET | 01-12-2007

I've been reading this blog and the comments on and off for a while now.

I lost my mom a few years ago to lung cancer that had metasisized to her brain.

Thankfully, our family has recovered to the extent that it's possible in this instance.

Occasionally, her death comes up in casual conversation with friends and colleagues, and I always wind up taking the stance that even in her death, there was some solace in that I had time to say good-bye.

But then I wonder if that's a selfish thing, as I know that she was in some pain and her quality of life was far from what anyone would want.

It's part of the whole quality vs. quantity debate, and man, that's a difficult proposition to consider.

But I'll always wonder whether it was good to have time to say goodbye, even considering her state of life, or whether it would have been better to go quicker — to go out on top, as a retiring athlete might say?

Sent by OPIchabod | 4:43 PM ET | 01-12-2007

Dear Leroy:

Please accept my heartfelt thanks for sharing your thoughts with us. As a fellow cancer fighter (multiple myeloma since Feb 2004), I appreciate your courage, honesty and frankness in bringing to light the thoughts and feelings that so many cannot or will not express.

As you discuss your treatment options and the difficult decisions that are upon you, I felt compelled to mention a fairly experimental treatment for inoperable, metastatic lung tumors in a stage 4 colon cancer patient who is no longer responding to the last chemo regimen available to her. She has received CT-guided needle cryotherapy for one tumor located in a very tricky place in her lung. The early indications are very promising. Long-term studies are not yet available. You may have already researched this course of treatment and/or you may not be a candidate. In the event that you had not heard of the cryotherapy possibility, I thought I would bring it to your attention as you weigh all of your options at this juncture.

Whatever you decide is the path for you, I wish you strength and equanimity. Keep up the good fight.

Sent by A.D. | 4:45 PM ET | 01-12-2007

For Pam, who should make the decision about when life should or should not be extended? How many resources should be expended to save a life? Are some lives more valuable than others? Is there a particular age at which you would say no more resources should be extended to prolong life? What age would that be? 40? 55? 60? How would you determine when a life is complete? I do find your comments "heartless" for they suggest that those who take expensive treatments to prolong their lives are selfish. Yes, I am privileged. I have never experienced war, genocide, hunger, or poverty. However I don't believe my cancer treatments have much to do with the horrible inequities that exist in the world. I am simply a 48 year old woman with a husband and young daughter who need me very much, a woman who is willing to do whatever I can to make sure cancer doesn't rob me of my life. It's just one ordinary life, but I think it matters.

Sent by Jeanmarie | 4:47 PM ET | 01-12-2007

I was saddened by Pam's comment on 1/11/07 that she questions the morality of using resources for one cancer patient, in light of all the suffering in the world.

I have always respected the teaching of the Jews that he who saves one life saves the whole world.

My husband has a rare and life-threatening cancer, GIST (gastrointestinal stromal tumor, a soft tissue sarcoma). Had Pam been at the large cancer center where my husband had surgery in November 2006 and seen its many, many floors filled with cancer patients - well, Pam would now see more clearly the enormous number of people with cancer. And that's just one cancer center.

The French government has begun a nationwide campaign to educate its citizens about cancer and has titled the campaign "2 Million Heroes." If my high school French still functions, I believe that is the number of French people who are diagnosed with cancer every year. That's in a small country.

Pam, cancer does affect more people than I think you know. I truly hope that you are never one of them, as both my husband and I are.

Sent by Diane Schmitz | 4:49 PM ET | 01-12-2007

If you DO decide for the chemo, Leroy, I hope you take the opportunity to buy fun hats or have — as a friend did for me decades ago — body paint a fabulous Peter Maxx style work of art on my bald head. You are already well-versed in finding joy amidst tough circumstances, so I know I'm preaching to choir, but hope above all, that your choice (chemo or no chemo) will come clear for you, and that you will be settled and whole with whichever way you choose. You are gift on this planet!

Sent by Sarah | 4:43 PM ET | 01-16-2007

Dear Leroy,

This is the first time I have read your column. I haven't had cancer nor would I attempt to offer any medical advise. Here's what I hope: whatever you choose, feel good about it. Make the choice and make it happen. Don't second-guess yourself. I will pray for a full recovery. May you soon find your choices are more which color socks to wear and not ones you are currently facing. All the best.

Sent by Carol Holt | 5:54 PM ET | 01-16-2007

Leroy, Saw you're doing the Discovery Channel town hall special with Lance Armstrong and Ted Koppel at the end of April. Way to go! (Though they don't mention your blog or pieces on NPR.)

Sent by M.J. | 5:56 PM ET | 01-16-2007

In response to Pam (1/11/07): As a cancer patient, I, too, have questioned how all of these resources are mobilized to sustain and prolong my life while for centuries war, poverty, greed, genocide, religious persecution and ignorant foreign policy function to destroy masses of innocent people. Those victims will not have the opportunity to live long enough to develop cancer or other debilitating

diseases. Today, this is painfully evident as I read the daily newspaper, while I wait to receive radiation after chemo. And, what of my suffering as it is juxtaposed against the suffering of those masses of victims worldwide? How do you calculate the value of an individual life? What is the best use of our resources in the service of reducing human suffering on a grand scale?

I think about these questions as I watch the medication drip down the tubing into my port-a-cath.

For me, the answer resides in what I consider to be a goal for a humane society. To value all life, we must start with the preservation of a single life. For the least of us, it is a right, not a privilege, to receive the best treatment available. That must be a model and a premise toward which all societies should aspire if we are to relieve our current despair, and create a more humane world, without cruelty and injustice.

Leroy, thank you for being the catalyst for this discussion. Your contribution here is invaluable.

Sent by Ellen | 8:46 PM ET | 01-16-2007

Dear Leroy,

I was saddened by the "heartless" and "ignorant" woman's comments. Whether you are a Christian or a humanist, none of us can judge another. We are on this planet to love, respect and support each other, no matter what the circumstances.

I wish you and your loved ones more time together — so you can continue to love each other. The time is so short for all us.

With sincere empathy —

Sent by Evy Engrav-Lano | 9:11 PM ET | 01-16-2007

Leroy, I saw the Special on "Living with Cancer" with your friend Ted Koppel. I am so glad that you are doing so well and I applaud your determination. My husband is 58 and is fighting for his life against Kidney Cancer. So many of your descriptions of the emotional roller coaster you ride from scan to scan describes our life too. Maybe, to give you strength the next time you have to take chemotherapy....just think about how lucky you are that there
IS A CHEMOTHERAPY FOR YOUR TYPE OF CANCER!! There is NO chemotherapy or radiation that is effective in fighting Kidney Cancer!!! We only wish that there was!! You spoke about perspectives in your 1-16-2007 blog...we look at you and think how very lucky you are that you have the Chemotherapy option! Stay well & God Bless you! klm

Sent by KLM | 12:17 AM ET | 05-07-2007