Difficult Decisions in Uncharted Waters

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

If it weren't for bad luck, I'd have no luck at all. That saying has been attributed to a long list of people. I'd like to paraphrase it, and say, "If it weren't for bad choices, I'd have no choices at all." That's the situation I find myself in now, trying to decide what to do about the tumors on my spine. When I first found out about them two weeks ago, I wasn't particularly worried. I thought I'd just have radiation again, and that would be it. Compared to chemo, the radiation I had wasn't bad at all. Except it's never that easy.

Your spine can only take so much radiation. And it turns out I've had about three-quarters of the safe dosage. That doesn't leave much room for more. If I went ahead with it, my spinal cord could be damaged. All sorts of bad things could happen. So that's not much of a choice.

I could try chemo. But the drugs available to me would make me very sick. And there would only be about a twenty-five percent chance or less that they would be effective. And this is where it gets good. "Effective" means about another four or five months. So that's not much of a choice either.

We could watch and do nothing for a while. One of the tumors, the largest, would most likely cause the vertebrae to crack or collapse within months, rather than years. In that case, I can have surgery. In an extreme case, they would replace it with synthetic vertebrae. And while having a bionic spine may have been great on television, it doesn't sound like much fun. The risks of that surgery are very high as well. So that choice? Well, there's starting to be a pattern.

The best possibility may be a new type of very precise radiation, designed for just my type of situation. But it's still radiation. I don't know if it will be too much radiation. Killing the tumors, but causing all sorts of sensory or motor problems, wouldn't be much of a victory.

I'm in this dilemma because my case is not quite normal. We've been able to kill, or just about kill, the tumors in my body. Normally, spine tumors aren't a huge problem because patients that get them usually have so many other problems that the spine tumors are a secondary concern. That's not the case for me.

So once again I find myself in uncharted territory. I'm going to have to pick one of these options. I'm going to have to make a choice. "None of the above" isn't on the list.

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I remember being told i have cancer, then immediately having to make many decisions about treatment, along with genetic testing and so on.....its hard enough to hear that you have cancer, then you have to decide what to do about it. Very overwhelming. In the end, i believe we make the decisions we are supposed to make. period.

Sent by Jenn | 6:47 AM | 6-18-2007

I am very sorry to hear this. I hope that a good solution becomes available. I also hope that you are able to find God in all this.

Sent by Crawford | 7:16 AM | 6-18-2007

Hi Leroy,

Yuck.

When my mom was struggling to get a grasp on quality of life issues, she discovered it was the first time since her diagnosis no one else could give her clear answers. Good options, not optimal, but options that had an upside were not available. She was not ready to stop searching and trying, but the choices were just as you described. I hated that for her. Bless her, she tried everything medically as far as it would take her.

In radiation, you may have a viable option. Why not give it a whirl. Precisely directed radiation, although still radiation, may be controlled enough and decrease the overall body dose. If you are comfortable with your doctors and they are comfortable with the trade-off, it is something to think about.

You're in my thoughts.

Sent by Teri Thomas | 7:18 AM | 6-18-2007

Hi Leroy and all:

It???s hard to know what to say except that my thoughts and prayers are with you as you make this hard choice ??? one which I have not had to face as yet. Sometimes, it???s a matter of sitting with it, alone or with friends until a choice emerges ??? even though none might be good. You have a lot of people pulling for you and with you.

All the best,

John Shippee
Atlanta, Georgia

Sent by John Shippee | 7:25 AM | 6-18-2007

Sometimes the choice is "the lesser of multiple evils"....

Please do account for quality of life in any decision.. sometimes quantity is not all it is cracked up to be.

Sometimes the cure is worse than the disease..............

I am sure I speak for everyone here.... we will support your decision what ever it may be... the decision will be the best for YOU.

With cancer there is so much uncharted territiory.......

http://www.canceradvocatescoalition.org

http://www.canceradvocatescoalition.org/CSC

Sent by Ronald K. Bye | 7:31 AM | 6-18-2007

None of the above it not a good choice. I can't imagine being in your shoes. I have a choice right now. Since I'm bald from the chemo the ganglioma's on my head are very visible. People say "oh what a nice shaped head" and then see them and wince "what's that"? At first I was calling them my perenials because they were removed once before. Now I think I look more like a flounder with it's two eyes migrating to one side of it's head. But my choice is easy, they are coming off on Friday. Don't even have to shave for the event. I wish all your decisions were that easy. I'm still thinking about you and open my email from you first to see what going on. Take care.

Sent by Lisa | 7:32 AM | 6-18-2007

Crap. Damn. I'm trying to keep it clean.

Wishing you much strength in the decision making of your less than good choices.

Grrr. Screaming for you.

Big XOXOXO
Lori

Sent by Lori Levin | 7:59 AM | 6-18-2007

Leroy...I cant believe the turn of events...it was seeming so positive..the trip to Hawaii, the tumors that were shrinking, etc etc... all a blurb now I am sure. I admired your courage and keep you in my thoughts.
I wish you peace
Terry

Sent by Terry Keegan | 8:04 AM | 6-18-2007

I've been so sorry to read that your cancer vacation is over -- way over. It's got to be so awfully frustrating to be looking for a way out of the situation and finding that most doors are closed to you. What is the precise radiation that you are talking about? Is it IGRT (image guided radiation therapy)? I had that with almost no side effects, while others with my cancer usually suffer mightily from intestinal side effects.

You never mention complementary medicine (CAM). Perhaps you never wanted to rely on that, seeing it as fairy dust in the face of such things as chemo. Now that science has so little to offer you, though, do you think you might try some of the more proven CAM therapies? The NCI (National Cancer Institute) has a nice overview of which therapies have been studied and found to be effective. At the very least, they are "proven" to work in helping to ameliorate the side effects of "standard" medical treatment.

I hope you will have lots and lots of whatever brings you comfort and healing.

Sent by jane | 8:08 AM | 6-18-2007

Good morning Leroy,
I started to say "are we having fun yet?" but decided glib wouldn't be funny. My radiation for the pancreas was the newest type. They focused just on the pancreas. I had none of the side effects that come with wide area radiation. Now if I can get rid of the liver tumor that popped up.........
You think "doesn't this ever stop?" but for some it does. Lance Armstrong comes to mind. So lets just hope it works for the rest of us. The decision you make will probably be the best one for you and I'm praying it works.

Sent by Lou Mayers | 8:31 AM | 6-18-2007

I would get evaluated by a proton facility if you wish. Let me know if you're interested via email Leroy, I know the folks in Gainesville, Florida. --Krupali

Sent by Krupali Tejura MD | 8:31 AM | 6-18-2007

Leroy,

I am sorry that you are in the position you are in. My husband is in a like position. It is very hard to have to make a decision like this. I find it also hard for me because I can't make that decision for him, even though I just want to say continue to fight. I have discussed you many times with my husband and told him you are fighting this so hard. But I really do know this is a very personal decision that only the individual dealing with this can make. I and many are with you Leroy. We are behind you no matter what your decision.

Dorothy

Sent by dorothy | 8:32 AM | 6-18-2007

Hi Leroy,
I've hesitated to post for a long time. You see, I'm not an active member of the cancer club. While I have my own problems, my experiences are with people I've loved and lost to an ugly disease.
In one case, my cousin made a choice I didn't agree with. I thought she should have gone for more aggressive treatment-because I loved her and I wanted her to live as long as I wanted her to.

Ten years later, I realize that she did decide to live. And I guess,in my naive way, I believe that no one really chooses to die. They simply make a choice about how to live with this horrible, unfair disease.

I've read your story for almost since the beginning. And I admire you for having the strength to spend time focusing on a disease you probably would rather not think about.

I don't have any special advice or insight here. I just want you to know you're in my thoughts as you make your next life choice.

Sent by Libby Shoemaker | 8:40 AM | 6-18-2007

Hi Leroy, You're right. It's pick your poison time. But, hopefully, one of the newer targeted techniques like novalis shaped beam therapy or chemoembolization will turn out just right for your situation.

Sounds like you're in good hands and everyone on your team, especially you, is trying to make careful, thoughtful, hopeful decisions. The practice of Medicine doesn't get much better than that. Best Wishes with the process and the decision.

Sent by Marilyn | 8:46 AM | 6-18-2007

My husband said trapped like a rat - that is how he felt.

Sent by Irene | 9:19 AM | 6-18-2007

Leroy - I'm going to try to reframe this for you - that's my coping strategy these days. Be thankful that you have options. They may not sound good, but they might work. It was options that got you this far. I think the fact that you have gone public with your cancer puts pressure on your docs to find every possible option for you (hey- whatever works). Hang in there options are actually good!

Jill

http://myspacejill.blogspot.com/

Sent by Jill | 9:28 AM | 6-18-2007

Leroy,
Hard choices. I hope whatever you choose is the right answer for you.

Good Luck.

Sent by Brit | 9:37 AM | 6-18-2007

Hello Leroy: I can't think of a thing to say that's not trite, however I am empathizing with you and each morning I dread opening your note thinking you will have received more bad news,
or will have made the decision to stop all treatments.

One choice I haven't seen you explore is particle radiation, or proton therapy. From all I read it's very
precise and low on "collateral" damage. Expensive and typically used from "deep" tumors. I've seen it applied, apparently successfully, on the retinoblastoma of an 18 month infant from Calgary as well as for brain and lung tumors. I've recently completed the 42 treatments required for a prostate cancer tumor and have minimal side effects 2 months after completion. I am waiting( no anticipating with some dread) the results of my first follow up blood work at the 3 month marker in mid July.
What you've shared is invaluable to all, patients and caregivers.

In gratitude for your work
Joe Landry
Houston Texas

Sent by Joe Landry | 9:49 AM | 6-18-2007

Dear Leroy, I read your blog this morning and I am feeling very sad for you. My husbands scans are coming up in a couple of weeks and we are bracing ourselves for more bad news, only because we have never received any good news so to speak. I know exactly how you must be feeling at this point in time, anxious, fearful, angry and frustrated. My husband and I have gotten to that point as well. We all have a little voice in us that tells us what to do, what choices to make. When do we learn to listen and trust that voice? I don't know. I have so many mixed emotions. My heart and head are both spinning.

My husband is totally disgusted with taking chemotherapy. He is in a very bad state of depression and was just put on Lexapro. Although he does not like to discuss his cancer, as I have told you in the past, I notice that he is starting to complain about the way he has to live his life. It saddens me because I do not want to lose him; I don't mind caring for him and going through chemo and scans with him, at least I have him near me. But, I guess that is being selfish on my part. Yesterday was Father's Day. We were surrounded by our children, had a lovely dinner and yet it was one of the saddest days of my life. I think we were all thinking the obvious. Will there be a next year?

I hope you make the right choices Leroy and wish only the best for you. Miracles CAN happen. Maybe we will all get some unexpected GOOD news in the near future. Thank you for being who you are Leroy. Always in my prayers, Sasha

Sent by sasha | 9:53 AM | 6-18-2007

Hi Leroy,
There are no words for the position you are in, sometimes it seems like we should just get one of those magic 8 balls and shake it to help us make a decision when all the decisions seem so overwhelmning. I refer to my cancer as my journey....sometimes the road is smooth and other times the bumps and holes are just awful. We never seem to get easy just add water answers to the problems that we face on treatment and just having this disease. Sometimes we just have to go with our gut and see whats ahead. Know that all of us are are thinking positive thoughts and we will support you in any way we can.
Miriam

Sent by Miriam | 9:56 AM | 6-18-2007

My dad use to say: "Follow your gut- get all the facts, then follow your gut. Because once you have the facts and know what feels right in your gut, you will then be guided by your heart." Cancer really sucks.

Sent by Kay | 10:10 AM | 6-18-2007

My late wife went thru an almost identical situation a couple of years ago. While Gamma Knife did not give her much additional time, it gave her some hope. While making your choice, I suggest gathering your support network to you now and planning tactics based on possible outcomes. You need to question your doctors or their staff very closely on what you may have to deal with. They rarely tell you all the possible side effects, I've found. I've not heard much about your family, close friends, etc. and their support of you. But most likely they will be needed as effects of whatever happens starts to take hold. Best case, you'd get to know them better and their help won't be needed!

I'd be more than happy to discuss my experiences in this further through email, rather than in a public blog. Why? Because some folks reading this may find reality not a place they like to see. No one knows what it's like until they have walked in shoes like yours, or helped put them on someone who was.

Good luck, stay focused on the present.

Sent by Al | 10:18 AM | 6-18-2007

Given the choices as outlined for you, I'd say that Plan A that should be considered is the proton beam therapy. Perhaps with its precision, it can zap the tumors while affecting the surrounding tissues and spinal cord minimally.

You know we are with you regardless of your choice. The prayers continue for another visit from NED.

Prayers and blessings as always.

Sent by Al Cato | 10:19 AM | 6-18-2007

Leroy my mother had cancer at first it was female cancer. And they said that they got it all and she had nothing to worry about.but it came back but then they could do nothing about it that was 25 years ago. To day they have new and all kinds of medicine and treatment for you if one don't work try another but the word is fight,fight.

Sent by Dana Daniels | 10:33 AM | 6-18-2007

Leroy,
I got to know and respect you through the daily e-mail notifications you sent letting us know what the subject of that evening's Nightline would be. (I was a fan of the longer version, because it gave me insight into how you reacted to the topic). Then I lost track of you for a while, until a few months ago when I heard of the cancer and this blog. (Interestingly, I didn't want to write "cancer" at first, but then I realized that "your situation" is somehow disrespectful). After that long winded introduction I have nothing else to say except that I am so sorry and you will be in my thoughts and prayers as you continue this battle.

Sent by Linda | 10:35 AM | 6-18-2007

Ugh.

I'm sorry you find yourself in such a scary place. As someone who watched her mother make some hard decisions, I can honestly say that I would support any decision you make. It's your life, and it's yours to do with as you will.

I would stand behind you regardless of the path you take.

Lisa

Sent by Lisa | 10:42 AM | 6-18-2007

Dear friend:
I cannot eloquently express my feelings for you and about your situation right now. So many others have already done it so beautifully. I will just say that you are in my heart and my thoughts. I send you all the positive energy I can muster. My fervent wish is that when you make your decision, you will find comfort and relief from having done so. Spiritually, we are all beside and around you, embracing you and giving you strength.

Sent by Harriet | 10:43 AM | 6-18-2007

Leroy:

I'll keep it short this morning; just wanted you to know that I keep you in my heart! Good thoughts and prayers are sent your way throughout each day. I just hope that you continue to live your life to the fullest and that you trust whatever decision you make! I'll end this with one of my favorite quotes by Souza:

DANCE as though no is watching you
LOVE as though you have never been hurt before
SING as though no can hear you
LIVE as though heaven is on Earth

Leroy, you will make the right decision...and we are behind you 100%. As always, you will be in my prayers! With love!!

Sent by Tess from KY | 10:44 AM | 6-18-2007

Choices, there appears to be no good choices. If someone would just tell us this will work.
Why is there not more money spend on cancer research? So much is spend on aids; and the aids is usually caused,95 percent of the time, by a bad choice the person made; but, cancer was not caused by what you did or my granddaughter (20 year of age) did. Neither of you made a bad choice that caused your cancers. Tomorrow we go back to the doctor; she has tumors in her liver; and now a tumor between her intestines and female organs and she is actually in the bed with severe pain. I ask the doctor about John Hopkins, etc., and he appeared to be upset at my questions. I really got no response. Maybe tomorrow will be a better day. Maybe, you will have a better choice tomorrow and maybe Ashton will have a choice where you both can have a little normalcy in your life. Ashton has had four years of operations and chemo; she says no more to chemo. May God Bless you!

Sent by Mavis Adams | 10:45 AM | 6-18-2007

Hi Leroy,

I don't know what to say except, my thoughts are with you. Listen to your "gut" and go with that. I'm sending positive healing "vibes" your way and hope everything goes well for you. Take care, Shirl

Sent by Shirl | 10:47 AM | 6-18-2007

I know the feeling my friend. I have Stage IV RCC with bi-lateral kidney tumors and mets to lung, spine and pelvic bone. Fourth rib was destroyed by the time they figured out what was going on. Before starting my meds I had 12 radiation sessions that were "20-30% higher than normal" to try to stun the spinal met. Kidney cancer is typically resistant to radiation. So my neurologist put a plan in place to airlift me to neurosurgeons in Boston if I started feeling numbness from the chest down. That was in March. Since then I worry that simple things like rolling over in bed may snap my spine or pelvic bone.
Exactly one week from this moment I will be in a CT scanner at Dana Farber to learn my fate. I've had no scans since they discovered my beast on 2-2-2007. I fear that it has progressed on my spine during this long period and doubt that I'll have any good options if it has. Like I said earlier ... I know the feeling my friend. Good luck.
Shaun

Sent by Shaun | 10:49 AM | 6-18-2007

When I read today's post, I thought, "Why does anyone become an oncologist?" If I had to sit and list these "options" to a patient (and do it many times a day), I would want to move to a cave and never see people. But then Krupali chimes in with a suggestion and I realize what a wonderfully special calling it is to look at information like they have and always, always look for a solution. God bless them.

But.

These are the choices, hmmm.

I have talked about my little J before(8 year old, cancer since age 2, facing a new primary osteosarcoma, in the middle of chemo to prepare for surgical removal of tumors and bone in her knee and leg). She had a list of horrible choices when the new cancer was found. Mom thought one thing, Dad thought another, J thought still another. What to do?

Well, they found yet another oncologogist who had a counseling bent and he sat down with the adults and helped them talk through what they wanted for J. It was interesting to see the peace that came over the family when they worked out all the quality vs. quantity issues and honestly discussed palliative care and the other difficult issues that face them.

I think you should call Krupali (whom I love from afar for the sense and calm she (I think I remember she is a female) brings to her work. You are like I was--you want all the information, in all its horrifying numbers. Digest the choices with her and know your docs will support you in whatever choice you make.
Then, get fighting in whatever way you choose. You are still above ground (as my oncolgy nurses say) and you probably did not expect to be here in 2007--so every minute is gravy.

These are the most personal of choices and you know that we know you will find the best choice for you.

Peace. We are all pulling for you.

Robin

Sent by Robin | 10:57 AM | 6-18-2007

Leroy:
I can certainly relate to your tough choices... MDA has been monitoring an indolent tumor @ T4 on my spine for a little over 3 yrs now. While I can't complain that recheck after recheck has passed w/"no change", this does not bring a sense of complacency...it's not a good feeling, waiting for that pathologic fracture!
[After making what seemed like the full round of the radiology dept, MDA declined to treat my tumor #1)since I have already exceeded my lifetime dosage, and #2) it is too close to the spinal cord.]
I am going for another set of scans this week -- but I too may be exploring other options; this "watch & wait" game is a killer!

Sent by Val Jaffe | 11:03 AM | 6-18-2007

Dear Leroy,

Absolutely investigate ALL options. Ask every questions that comes into your head, and write the ones that do when you are waiting or have already been seen for the next time. Don't let any stone go unturned.

Keep looking and hopefully the answer and treatment will be there. Prayers for all, patients, families, care givers. We are a "family."

Sent by Susan Chap | 11:04 AM | 6-18-2007

Dear Sash,
I read your blog and can commiserate with you in regards to a bittersweet Father's Day. The whole family was together this weekend because it was also our anniversary. The weekend was quite bittersweet since my husband is struggling with cancer. I couldn't help but think about next year.

Sent by Elaine | 11:08 AM | 6-18-2007

Dear Leroy,
I've been reading your blog since the Ted Koppel special, and now feel compelled to send a message.
I've been battling cancer(s) for twenty one years now, and like you, my options are dwindling at an alarming rate.
I am just recovering from double prophylactic mastectomies that I did because if I were to have another breast cancer I have no treatment options. I've had so many chemo regimens, and full body radiation (for advanced Hodgkin's 21 years ago) that our fire-fighting equipment, like yours, is almost non-existent.
I can only say how sorry I am, and how I do truly feel your pain in these decisions... but I would carefully factor in the quality/quantity aspect... especially as it regards the chemo!

Sent by Patricia Sica | 11:10 AM | 6-18-2007

Dear Leroy,
My heart is heavy after reading today's blog. It just seems obscene for a good man like you to be faced with such horrible choices. I have no words of advice. About all that comes to mind is this: a few times in my life, I have seen amazing things happen, things I would have sworn were impossible. I hesitate to use the word "miracles" but that's how it seemed. We don't know everything, and doctors don't either. I'm holding onto hope for you! Meanwhile, as you grapple with those decisions, I wish you peace. However it goes, you have the caring and support of many, many people.

Sent by Doris | 11:13 AM | 6-18-2007

Leroy: My heart and prayers are with you. I'm sure I'll be facing a similar decision with the metastasis in my spine in the not-too-distant future. Also, I've already had radiation to a node in my mediastinum that was invading my trachea and right bronchus. If it starts to grow again, I won't have that option any longer. Eventually, it will obstruct my breathing. Not a comfortable thought. Choosing among bad choices is a horrid situation to find oneself in. We all hope for the best for you, our friend.

Dr. Tejura: Would you mind giving us the "Readers' Digest version" of what a proton center that offers that others do not? Or if you can't do that on this blog, do you know of an internet site where I could read about it? My care is through Emory Winship....where you did your residency!

Many prayers and blessings, Leroy!

Sent by Sandra Shuler | 11:14 AM | 6-18-2007

Leroy

You'll make the choice that fits you best. I'm sure of it.

Libby:

Terry decided to stop treatment, which I did not at all agree with (selfishly), but it was the right choice in this case. It was a choice of "living to treat" or "treating to live," and when that balance changed Terry made the choice.

Quite honestly I'm not sure I'd be strong enough to do that, knowing the outcome.

Sent by Bruce | 11:58 AM | 6-18-2007

Leroy--

Have your doctors discussed proton radiation therapy? It's a lot less radiation than x-rays. Info at:
http://www.llnl.gov/pao/news/news_releases/2007/NR-07-06-06.html

--from an old colleague

Sent by Bob Hirschfeld | 12:03 PM | 6-18-2007

Leroy,
First time to post, I have been reading the blog since the Ted Koppel special. My husband was diagnosed with prostate cancer in Nov, 2006. We faced what all people with cancer face, what to do now?
ALL of the choices for this cancer SUCK!!! Your life may be spared but with the side effects you have to decide if the quality of life is going to be acceptable. We decided it was. Pathology after surgery was a bit scary, the doctor sent us to a radiation oncologist because apparently some cells may have 'escaped' the prostate itself. So again, what to do decision time. We opted for wait and watch, the odds of local recurrance are too small to justify the horrendous side effects of radiation. He is so far cancer free, now it has become the 'PSA test results' worry every 3 months.
Hang in there Leroy, you are a great inspiration.
Diane

Sent by Diane | 12:04 PM | 6-18-2007

Hi, Leroy-

Kathy Bero again.
What a crappy hand you've been dealt, and still you sound in control. I very much appreciate your steadfast strength. (Even though you probably don't feel so strong.)

I wanted to once again encourage you to try reiki, if for no other reason than to give you strength and boost your immune system to take whatever they give you.

It has been brilliant for me and my docs have been impressed. I spoke at UW-Madison Cancer Hospital over a week ago to a group of "survivors" and medical staff about it. I was surprised by how tired and sick most of the "survivors" looked. I am consistently told I look healthy. There truly was a stark difference between my appearance and that of the others that have gone through the same thing I have (inflammatory breast cancer/high-grade head and neck).

I had to ask one more time for validation that my treatment/recovery has gone differently than what is typically expected. The medical staff said absolutely and that was why they wanted me to speak. Hopefully, encouraging others to try reiki. As the saying goes, "we have nothing to lose."

If for no other reason than for the novelty of doing something different and relaxing, give it a try and write to us about your experience.

God bless you, Leroy. Stay strong!
kathy Bero

Sent by kathy bero | 12:06 PM | 6-18-2007

Leroy,

The news isn't that good, but what do your doctors suggest you do? The choice is up to you, of course, but I like to ask questions like, "what would you do if you were me?" You might not agree, but you might get to another level of advice from you physician.

Whatever you do, as long as you write this blog, I will stay with you.

I guess as long as you don't want to just stop treatment, you probably shouldn't do that. Go with the best of some bad options and see what happens?

Because you have shared your innermost life with us, I have very caring feelings for you. I hope that is okay. You are on my mind and in my heart - just as a dear friend would be.

I know everyone else who blogs feels the same way. Isn't it amazing?I hope in some way that all this outpouring sustains you.

Sent by Diana Kitch | 12:27 PM | 6-18-2007

Leory, I have a heavy heart after reading what you are facing. You will be in my thoughts and prayers. I think at some point many of us will face this same situation. Thanks for sharing your thoughts and helping us learn to deal with tough decisions.

Sent by Charlotte Kewish | 12:29 PM | 6-18-2007

Dear Leroy,

Anyone fighting this disease learns over and over again, that life isn't fair. All of us reading your blog recently are so sorry you've had that lesson presented to you again.

I had a difficult decision to make about my teatment last spring. I was lucky that I had time to wrestle with it for several months while I did my chemo therapy. I am now very comfortable with my decision, but I remember feeling alone for the first time in my life when I was making that decision. I had the best support system in the world during my treatments, but no one could really help me with that decision and that's a lonely place to be. Here's where I hope that you experience one of the benefits of sharing your journey with all of us. Even though this is your decision, I hope you feel the energy and support of all of us who have also had to make tough decisions in our journeys so that you are confident in your decision and the outcome is positive.

Sent by Jan Scholl | 12:38 PM | 6-18-2007

Damn it!! Not what we wanted to hear.
I know quality of life is all important, but when do we relent an think about the quality of death?
I have visions of going out like a Viking, on a burning ship on a cold and starry night to slip away. Not gasping for breath in a hospital room full of CNA's that want to get off their shift so they can meet their boyfriends for dinner.
Have I turned into a cynic?

Sent by Tim | 12:51 PM | 6-18-2007

If you lived in my town, I would come by with a chicken pot pie and a vase of flowers from my garden.

Can't stop thinking of you.

Sent by Robin | 1:04 PM | 6-18-2007

Leroy,
I am also a Stage IV caner patient/survivor. I have been following your blog for several months now, and I have identified with much of what you have written. I have been traveling lately, so the last entry of yours I read before I left was one in which you were back from Hawaii, and awaiting a scan (sounded like you had a wonderful trip). Today I just read that your scan was positive (how is that for a misnomer). I am sorry. It may not help at all, but I want you to know that I have been pretty much continually grappling with mets myself for over 2 years now. This can be a long and very unusual journey. Certainly it is often unpleasant, other times it is downright awful, but there are the times like your trip to Hawaii. As long as we are both alive, I will be pulling for you.

Regards,

Andy

Sent by Andy Giusti | 1:05 PM | 6-18-2007

My husband also has metastases on the spine. We are looking into radiofrequency ablation (RFA) which can now be used effectively for many spinal tumors. Maybe this could be a GOOD choice for you.
Mary Della Torre
Ojai, CA

Sent by Mary Della Torre | 1:05 PM | 6-18-2007

Leroy,
I'd like to add my encouragement to Kathy Bero's that you consider trying reiki, or a related "energy" treatment. My husband has been receiving healing touch therapy as well as his oncological treatments since his diagnosis over two years ago. He has had a similar response to Kathy's - an increased capacity to marshall strength and resilience that is noticeably unusual in patients with his kind of cancer. It has the additional bonus of carrying no negative side effects - it's all good.
Thinking of you while we wait for results from this morning's scan. Courage to us all.

Sent by Ceese Stickles | 1:08 PM | 6-18-2007

I've been following the blog since the show aired, and I want you to know how much it has meant to me. Hearing your story on the show was a turning point in a way for me. It was such a relief to hear someone telling the truth about what having cancer is really like. My heart broke when I read that your cancer was active again.
Your blog today addresses just what I have been thinking about today. Last night I spent some time researching my options for the next part of my treatment, and I found that just like with each stage of this journey - there were options, but none were really desirable options. (What an understatement.)
It makes it harder when I'm having to consider the options and make decisions under the cloud of fear and anger and whatever other emotions are wiggling up at the time. Today I just feel sad and beaten down, and I am giving myself permission to be there. I know I will get back to my fighting place, but right now, I just need to let myself grieve it out.
I don't have advice to offer or words of wisdom to convey. I just wanted you to know that there is one more soul out here rooting for you and sending you positive energy.
May you find peace in whatever comes.
Scarlett

Sent by Scarlett Harris | 1:10 PM | 6-18-2007

Thank you for your bare-faced honesty on your options, as in other things, Leroy. I hope you can still manage "time outs" from cancer decision-making to refresh your perspective, revive your sense of humor, and feel like you still can have uncolonized time to enjoy. May you find both clarity and peace as you sort this out. And may you have safe places to rant and cry prn. Your difficult choices remind me of what my grandfather used to say when as children we'd ask what he'd like to drink with his dinner: "Not knowing, I feel a certain delicacy in articulating for the fear of deviating from the path of rectitude." With every conceivable good wish for your health and joy,

Sent by Sarah | 1:13 PM | 6-18-2007

Dear Leroy,
Your piece today makes me think of what a lonely experience cancer can be. We get all of the input about decisions like this, but in the end the decision is ours alone. I hope there is some confort in knowing that while you alone can make the decision, there are so many of us keeping you in our hearts and minds. May that take away some of the aloneness of it all.

Sent by Linda Newson | 1:27 PM | 6-18-2007

Hi Leroy. Talk to the people who have had spinal surgery. From what I understand it is usually quite a good option, although the recovery is tough. I'm glad that "none of the above" is not something you consider an option. I often tell people who say "I have no choice!" that "Yes you do have choices; they might suck, but you have 'em." Love and a hug

Sent by Alycia Keating | 1:31 PM | 6-18-2007

Dear Elaine...............thank you for your thoughtful comment. It does help to know that others share the same feeling; almost makes it kind of normal. This blog is a place where we find safe people to share ourselves with

Sent by sasha | 1:42 PM | 6-18-2007

Dear Leroy,

I recorded the documentary on DVR and waited to view it. I have needed to view it in segments with my husband ??? I didn???t want to look at it alone. Yesterday we got to the part where you were cancer free and I cried with elation. I also eagerly wrote down the information about radiofrequency ablation, Johns Hopkins, and Dr. Georgiades to start researching on my own. I decided I had to find your blog and start participating. I have metastatic breast cancer that has spread to the lungs. Originally diagnosed in fall 2004 ??? I was cancer free for about a year. I was diagnosed in August 2006 with stage 4 mets. Yesterday I started reading your blog for the first time. I read from recent entries backwards and stopped at the June 7th entry. I am so sorry that the beast has resurfaced. Please know you are in my prayers for healing, for discernment about how to choose among options ??? none of which are a sure thing ??? and for peace. You and all the bloggers make me feel less alone. Watching the documentary with my husband I would from time to time echo a ???yes??? or ???that???s right ??? that???s how I feel???, or ???that???s what it???s like??? because you all could express what I???m feeling and facing and it would help to open a dialogue between me and my husband. Thank you for the documentary and thank you for this blog. I???ll be checking back daily. I???m so sorry that it is back Leroy.

Kim Barbato

Sent by Kim Barbato | 1:47 PM | 6-18-2007

So sorry Leroy, your emotional honesty is a great help to all people, cancer or no cancer. All is a matter of time. Thank You. Elizabeth

Sent by elizabeth sebastian | 2:02 PM | 6-18-2007

Dear Leroy,

I am so sad for you. I check this site every weekday now to see what "fresh hell" you are going through. My mother is in the chemo chair for four-five hours today. Her hair is coming out again in clumps, she has the neuropathy in her hands, the bowel problems, the bone pain from the white-blood cell shots. She couldn't take chemo last week. Too sick from it, so she had to skip a week. We had a family Father's Day get-together yesterday, and I couldn't help but wonder if this will be the last one she'll ever see. I thank God now for every single day we're all together. Every single breath we get to breathe. My heart is with her, and you. I have no advice, just want you to know you are in my thoughts and prayers as you decide what to do next. Gosh what a bummer!!!! What a total tragic mess for you and everyone else to have to endure this awful, vicious disease. So much suffering. I HATE CANCER!!I am torn between depression, anger, fear, and helplessness. Deep in my heart of hearts though, (where I sometimes have to scratch and claw to get at to decide what I really believe) I still have hope. We're hanging on.... hope you can do the same. God Bless.

Sent by Connie | 2:08 PM | 6-18-2007

Leroy,
This is my first post. I've been reading since my 67-year-old husband was diagnosed with superficial non-invasive bladder cancer in March, found incidental to kidney stone f/u. In an earlier life, I was a radiation therapy technologist. I learned to respect a cancer patient's decisions, no matter how irrational they seemed to me. I learned there are worse things than dying. And, I learned that everyone's 'worst thing' is different. Spinal cords are sensitive to radiation, and you are in a very tough spot. I agree with those who advise you to trust yourself. Only you can know what constitutes a meaningful life for yourself. In starting this blog, and letting us know your insides (thoughts, feelings, joys, saddnesses) vs your outside self, you have already left a lasting legacy and been of tremendous benefit to all who know about you and your situation. Do what YOU need to do. There's a saying, prepare for the worst, expect the best. Live so you will have as few regrets as possible. And this is true for everyone, diagnosed with cancer or not. A cancer diagnosis just makes more immediate the need to be more aware of the joys of the moment. You are fighting a good fight. Thank you for your important contributions to us all. Sydney Lantz

Sent by Sydney V. Lantz | 2:16 PM | 6-18-2007

Dear Leroy, As I read your presentation of each of the alternatives and their difficulties/uncertainties, my heart grew heavy for you. So far I've been in denial about the future when I'll, no doubt, have to make similar choices. But, we're all walking down this bumpy road together - some faster, some more slowly. We are each more dignified by your example and your sharing.

Sending good wishes to you, and to Stephanie D.

Sent by Sheara | 2:22 PM | 6-18-2007

Leroy, Yuck. Nothing but bad options. Can you get aggressive and do more than one? Have the amount of radiation left you can safely have while also having chemo--always saving spine surgery as an option as well? I guess that would be my strategy is to figure out which options could come after other options have been exhausted. But it sucks that these are all the options there are.

I am so impressed by how comments on this blog have grown since the TV special. You reach so many people also going through similar struggles. Thank you for that. I think if people's good wishes for you were enough to heal you, you'd be healed. And yet, they aren't and ultimately you have to make this hard decision between bad options. My heart is with you.

Sent by N.R. | 2:25 PM | 6-18-2007

Dear Leroy, et al.,
This is tough place we find ourselves in right now, and it isn't going to get any easier. I had the surgery to remove the mass on my ovaries last week, and frankly, wish I hadn't bothered. It was the return of the pancreatic cancer in my ovaries. I was hoping it was isolated there and this could slow the spread, but it is pretty my throughout my abdominal cavity.

The surgery won't extend my life. The purpose was to improve my quality of live. Well, I didn't feel as bad before the surgery as I do now. It's not that I feel terrible, but I just was beginning to have pain before. Now I have to spend my last of my precious sick leave recovering from a surgery that won't really help me. I think I was hoping I would be the first person in the world to die of cancer pain-free. I think it is not to be. I am out of options. So I don't even have the choice between bad and worse.

I try to find the joy in each day; some days it is more difficult than others. I think today might be one of the more difficult ones. But! I did hear from my son in Scotland and he and his fiance are going to get married here when they come for a visit in two weeks. It may be about as far out as I can make plans, but I am pretty thrilled!

Sent by Stephanie Dornbrook | 2:36 PM | 6-18-2007

Dear Leroy,
There are some choices that are so difficult to make that it truly boggles the mind and to make "the right choice" is the most difficult of all! You are in my thoughts each day and I'm hoping that you will find a treatment that won't cause more complications for you. All I can say is; know that you are supported and loved, your choice will be the right one for you and fight as hard as you can because you won't be alone. I'm with you in spirit!

Sent by Judith Tynan | 2:42 PM | 6-18-2007

Dear Stephanie,

I can't even get my head around what you are going through, mentally and physically, but even the hint of it rips my heart out. I have nothing else to offer except prayers. God Bless you and your family.

Sent by Connie | 3:19 PM | 6-18-2007

Stephanie

I'm sitting in my office sobbing. It's just all so arbitrary and unfair...but we knew that already.

I'm so sorry.

Sent by Bruce | 3:29 PM | 6-18-2007

Dear Leroy,
Please view my comments as a respit from the inevitable advice you get inundated with. I watched cancer take my mother, the strongest and most percervering will and force in my life and the lives of many others. Like you, she fought it to her last breath. My message is a message of inspiration and hope, as are your actions. You would be amazed at how therapeutic and homeopathic a strong will can be. What will happen to you is never inevitable until you make it so. Continue to inspire all of us in chronicaling your journey. Never let this disease break your spirit. Never falter, never give in...never. We fight with you...we perservere with you.

Sent by Paul T. Blades | 3:45 PM | 6-18-2007

I have read your blog since seeing you on TV, but haven't posted till now.

I can only quote my daughter's friend, who said the most REAL thing about my mother's cancer: "I'm sorry. This just SUCKS."

Everyone was so gracious and hopeful and kind... but this friend was the most honest and real -- and we appreciated it.

This just sucks. I'm sorry you don't have an "escape clause" right now.

Warm thoughts headed your way.

Carol

Sent by Carol Snider | 3:52 PM | 6-18-2007

Dear Leroy,

It's saddening to learn this news, but having any options at all is a positive. Although the ultimate decision of which treatment option to pursue belongs (or should belong) to the patient, what is the best advice your oncologists are giving you? I would want to look at statistical probabilities of each option for positive and adverse outcomes before making a decision. Also, how about talking with someone who has gone through each of the procedures you are considering? Anyway, here's hoping for the best.

Sent by Tim | 3:59 PM | 6-18-2007

There probably is no correct answer. Just know that you will make the decision that you feel to be the best for you. Cancer sucks, no denying that.
A fellow cancer survivor.

Sent by Jane | 4:00 PM | 6-18-2007

Dear Leroy,
Many have said much better but to quote a rock song "Listen to your Heart" & know you have blessed so many of us to have you as a guide through this cancer world. Your work has established this blog as an online community that many of us find truth &strenght & compassion.
To Shaun
Welcome to Boston & Dana Farber may you find it to be a safe & caring place as it has become for us. My husband has been treated there since March 2007 with RCC so we may share some space. Our experience with the team of doctors and oncologists has been growing into one of the hardest but most comforting and trusting of places. (Though for a NY Yankees fan it's hard since the Boston Red Sox are displayed & many decorate walls especially the CT scan area, check out the Ted Williams display case of his home run balls)
I too will confess that father's day was the saddest for me wondering if there would be any more and if my children would have another year to celebrate their Dad. Then I remind myself that they will always carry him with them as truely they know how much they are loved by him.

Sent by Cyn | 4:15 PM | 6-18-2007

My dear sweet Leroy,

You have helped, loved and supported so many of us. For that I'm am indebted to you. Whatever decision you make will be the right one, for you have given so much of the right moments to us. You are much loved in this universe and you have given so much of yourself to all of us.

Thank you..my dear friend.

Sent by Gail Hunsberger | 4:25 PM | 6-18-2007

Dear Stephanie,

I haven't addressed you specifically before, but want to reach out now. I saw you on the special and you seem to be such an elegant, refined, and dignified woman.

I am so sorry that things have turned out as they have for you and that you are worse off after an attempt to make things better. In cancer that seems to be the case quite often - hence, the cure is worse than the disease.

Just want you to know I am thinking about you and hoping that your son's wedding will bring you much joy.

Sent by Diana Kitch | 4:26 PM | 6-18-2007

Leroy,

I am a real motormouth today! I would like to know if there is any way all of us can e mail you in the event that you are too sick or out of it to blog?

I don't even know if this appeals to you or not. I do know that if you dropped off the map because of your tx, there are a lot of folks who would want to support you. Can the blog stay open?

Sent by Diana Kitch | 4:30 PM | 6-18-2007

Dear dear Stephanie,
If I may speak for all of us bloggers, our hearts and souls are with you during what seems like some fragile moments for you. Sending you strength and virtual hugs, praying.
Dear dear Leroy,
The right decisions will come to you, even tho none seem very good right now. Hugs and prayers comin yr way. Sometimes I wonder if there was life before this blog??? It has changed a lot for me and perhaps many others. Love to all, Sherri in Texas, dx BC 4-06

Sent by Sherri Eggleston | 4:33 PM | 6-18-2007

i tend push you in the direction of asking about proton radiation..As some have said a shot in the dark but worth the questions.
In my case it worked in an area in the head where they felt neutron radiation would do to much damage.
I feel bad in reading the above. But I know yo will leave no stones unturned in your own behalf..
Thinking of you and sending thoughts and prayers

Sent by Kerry | 4:44 PM | 6-18-2007

You are in my thoughts and prayers. Your courage in calmly sharing you dilemma amazes me.

Sent by Denise | 4:47 PM | 6-18-2007

Leroy,
I truly hate the fact you have to make such a crappy decision. Of all people I think you deserve some really good news. but anyhow, we deal with the cards we are dealt don't we? If cancer isn't bad enough to deal with..why can't at least the treatment options be easy to determine..I had radiation for breast cancer, the doctor asked me if i wanted to have radiation in the glands in my chest, they said a french study said it was a good idea, since some breast cancer reoccur in those glands. The downside was, that radiation so close to heart can cause heart damage. So bascially it was my decision, well I told them i much rather take a easy out with a heart attack vs. the cancer taking me out. So, I guess we all have to take the good with the bad and hope and pray it works out. Whatever decision you make Leroy, I think it will work out, you got all of us behind you..and trust me..by amount of people on this blog..they might have some pull!!! Thought and prayers are always with ya!

Sent by Dana Porter | 4:51 PM | 6-18-2007

Hello Leroy and Friends,
I have not posted in a while because I have been very busy, still trying to find some help in solving the riddle of what is going on in my body. All I know that everyone agrees with is that I am very ill, I was mis-diagnosed in the beginning, but because my case is complicated, I believe the doctors just look at my chart, see I do not fall into a boiler-plate category, close the chart and send me on my way. I am very depressed and angry, I do not think it is fair for a surgeon to say she thinks she made a mistake and did not get all my cancer, then does not follow through to help me find out the real truth. I have been to an oncologist, who also agrees I am ill, and have 2 types of cancer, not one, but then, after doing a CT and bone scan, did not find a clearly definitive approach, and told me to come back in a year. That will make it 2-1/2 years from my diagnosis of breast cancer in Feb 2006 to my next mammogram, which I think is criminal. Then to leave me hanging and not knowing if all the cancer was resolved is cruel. I am ANGRY AND DEPRESSED, but I do not think anyone on this board could blame me, if they were walking in my shoes. I am getting too tired, being my own advocate, to keep going much longer, my energy allotment is depleted. I am trying my best not to give up, but this is a tough fight just to get a proper disgnosis, much less decide what to do about it. My biggest fear is that if I finally am able to get someone competent to really look hard and give me the proper treatment and attention, they are going to tell me it has advanced to Stage 4, (it began with a 4 cm lump to begin with)and I still have a lot of swelling that is not normal and a golf ball sized lump under my arm. I am very, very frightened.

LeRoy, I do not envy you your position, and I do not have the answers, obviously, but I think looking into your spirit and acting based on what you feel is in your best interest is the only way you can go with this. With no more clear direction and the decision left to you, your heart must be your guide, now, and I am with you 100%, no matter what you decide to do.
Thank you for listening.

Love, Briana

Sent by briana | 5:00 PM | 6-18-2007

Dear Stephanie

I too would like to reach out to you and hold you up in my thoughts and prayers...........

I pray your son's wedding brings you much joy and peace...............

~Ron

Sent by Ronald K. Bye | 5:14 PM | 6-18-2007

Dear Leroy, I have been reading your blog for quite some time and continue to be educated and moved by your story and the way you tell it. I am an ordinary person, do not have cancer, and have had a very fortunate life so far. What your story has given to me however, is the point of this email. I have learned about compassion, witnessed your and others courage, learned how to approach those with cancer or other life threatening diseases or awkward situations, and gotten a glimpse of what they might be feeling in their lives. I want to say thank you for all of that. Isn't life a mystery when someone like you can so alter and enhance my life and you don't even know I exist. Thank you for everything you are doing....writing, sharing your innermost thoughts, educating and helping me understand a world I hope I don't have to visit but likely could. I will continue to be a daily reader and someone who is rooting for you every day. Sincerely, Mary Ellen Mueller

Sent by Mary Ellen Mueller | 5:20 PM | 6-18-2007

I'm so sorry to hear your news--that seems so inadequate, doesn't it? I read through the other responses and wanted to share something with you that I didn't see.

Because of the high doses of steroids and radiation my husband was receiving, his spine began to disintegrate. I wish I knew the specific name of the product, but a dr. was able to reconstruct his spine with 'bone cement'. You may be a candidate for it.

Not only was my husband protected from spinal cord issues, he was pain free after these treatments.

Ultimately we have to 'let go and let God' whatever that will look like. Good luck in your decisions.

Sent by Kathy Barney | 5:33 PM | 6-18-2007

Leroy -

{{{{ HUG }}}}

-Karole

Sent by K. Ives | 5:41 PM | 6-18-2007

Dear Leroy, Your blog is so popular that it is hard to post. I am sorry for what you are going through as I am going to also have to make some decisions when I get results of my tests. THANK YOU VICKY FROM NY for your comment to me. We are all brother and sister in this cancer world. It is so hard to make decisions as the treatment is worse than the disease so many times. I pray for you and everyone here for the help to make the decision that is best for each of us.

Sent by Vicki (FL) | 5:42 PM | 6-18-2007

Hi Leroy,
Haven't seen comments on hyperthermal treatments (or hypo, for that matter). Don't know if it would be applicable. If nerve tissue can withstand elevated (or lowered) temperature more than tumor tissue ... maybe. A couple degrees C might be a slow but relatively painless process of depriving the tumor of its preferred environment. Thermoelectric devices could even cycle the thing.
Dan

Sent by dan hortin | 5:43 PM | 6-18-2007

Leroy, I'm so sorry to read all of this. I wish I had all of the answers for you. Damn. I'm thinking of you, as always.

And Stephanie - my thoughts are with you as well.

Sent by Lisa Lindstrom | 5:44 PM | 6-18-2007

Dear Stephanie,

I am saddened for the outcome of the surgery. I truly hope the medical team can keep you as comfortable as possible. It feels odd to say, congratulations to your son and future daughter-in-law, I do hope you enjoy your time with them and everyone you hold dear.

We all should make every day count, as if it were our last, for it just might be.

Susan Chap

Sent by Susan Chap | 5:52 PM | 6-18-2007

Dear Stephanie,

You don't know me, but I do know a little about you from rading your entries and seeing you on the show. Like Diana, I feel your grace and elegance a joy. I need you to know you and everyone connected with this blog has made such an impact on me. I carry this blog inside of me, the words running through my mind, helping me be a better caregiver at the hospital. I thank you for that.

My heart sank when I read your entry.

You are in my thoughts.

Sent by Teri Thomas | 6:17 PM | 6-18-2007

Dear Stephanie,
Hugs, hope, faith, healing and strength. My prayers are with you. Sasha

Sent by sasha | 7:02 PM | 6-18-2007

Stephanie: I was delighted to see your name in the 'comments', but am very sorry to read your news. Thank you for keeping us up on how you are doing.

My prayer for you is that you can get the pain under control and feel good enough to hold that baby grandson on your lap while you watch your son get married and welcome a new daughter into the family. Thank God for families. Our time together is precious, indeed. Much love to all of you.

Sent by Sandra Shuler | 7:04 PM | 6-18-2007

Leroy, Just being told you have cancer starts your mind racing. You do research and find volumes of information, but none of the sites make a decision for you. This is a difficult scenario, your choices are poor, I wish there was more that could be done. I face the same choices. One could kill you right on the table, the other is to wait and watch. Niether excites me in the least. It seems to me the Doc should walk in the room and say "this is what we are going to do next." Doesn't work that way! Your choices are what they are, you can't change that, just make the choice and move forward. We are all praying for you, and are with you in spirit. Stan

Sent by Stan Wozniak | 7:15 PM | 6-18-2007

I'm a fellow Christian Meyer patient. You're supposed to have a happy ending...I'm scared for me that this is happening to you. I know it's selfish but I realize that if it can come back for you, it can come back for me. I'm so sorry you/we have to deal with this thing. Stay strong- for me...
Brian

Sent by Brian C. Doak | 7:15 PM | 6-18-2007

Leroy
Boy does this give new meaning to curve balls and speed bumps. This is going to be a hard decision, it helps me to put all of mine options down with the positive and the negatives, also with quality and quantity. I understand your frustration, I am on my last drug available to keep me in remission, everytime it comes back I have to keep myself from second guessing my decisions. I have been known to ask my drs if this was you, or if this was your mother what would you do (boy do they hate it when you do that). I hope you let us know your decision, my is also in the spine, I have already had 5 vertebra radiated, but it was only after T-12 fractured, take it from me avoid the compression fracture, I am going on 4 years with mine. Best of luck to you, follow your gut, it won't fail you.
Cheryl
Florida

Sent by Cheryl | 7:52 PM | 6-18-2007

LeRoy, I have been reading your blog almost daily since I saw your story on T.V. I, too, am a cancer survivor. To make a very long story short, I was diagnosed with Sarcoma Cancer in 1999. We started the attack on it in Jan. 2000.The cancer is called myxoid malignant fibrohistiocytoma. The day I was diagnosed I felt as if I had been hit very hard in the gut and could not take a breath. You are so right, life is never the same. I read all of your comments and can relate to them and know what you are going through. I live alone and having you share your thoughts is comforting to me. I pray that you will choose the best treatment for you and kick that cancer once again.

Sent by Connie Connell | 7:54 PM | 6-18-2007

Dear Leroy,

In addition to your medical options, I would like to suggest that you contact Dr. Micah Saidgh of Cedar Crest College in Allentown, Pennsylavnia. Dr. Sadigh is an expert in Autogenic Healing. He has had amazing results and teaches a course on the subject. You will find him to be a marvelous, spiritual human being. Dr. Sadigh can give you the energy with which to cope with this new challenge. Mrsadigh@cedarcrest.edu

God's Blessings to you.

Betsy Del Vecchio

Sent by Elizabeth Del Vecchio | 8:15 PM | 6-18-2007

Hey, Always hard to know what to say; I pray that you will be able to pick an option that will be the best of your choices...
I have last stage metastatic colon cancer, and I am taking care of my mother, who had breast removed in Feb; and she has althizmers that is gradually getting worse, so I do understand about making choices when dealing with cancer.I am on a 2 month chemo break after two years straight of chemo....I can honestly say for me, God is my comfort...think of you, Elsie

Sent by Elsie Susie Hager | 8:47 PM | 6-18-2007

Leroy,
I feel just sick about the choice you have to make. It's so cruel to have to pick your own poison. I don't think I could do chemo again like I had last year. I also don't think I could live with the pain I was feeling just last week from the met. cancer in my hip. There is no way out of this without some decision...no decision is a decision. I am sending you positive energy and light in the hope that whatever you decide will bring you some sense of peace. My heart is with you.

Sent by Laurel M. Jones | 9:08 PM | 6-18-2007

Dear Leroy.

My thoughts and prayers are with you right now. Right now, as my husband says, is all we have.

I have managed to 'dodge a bullet' myself with a recent dx. of breast cancer which was early but still cancer.

Your letters about your experience have been so helpful to me. Especially the documentary. I want to be of help to you and hope by reading your letters I am somehow a part of your community.

I hope you find a decision and peace.

I am holding you in mind.

All the best, Peggy

Sent by Peggy | 9:30 PM | 6-18-2007

To Cyn,
Thanks for the praise of Dana Farber. I thought I was their #1 cheerleader! I've been going there right from the start. Three hour trip, but I'll gladly make it anyday. Plus one of my daughters lives in Boston. My doc there is unbelievable. A month after my diagnosis, my brother learned he had advanced prostate cancer. He wound up having DaVinci robotic surgery by one of my doc's associates. I happened to have an appointment that day as well so after seeing my guy, my wife and I crossed the street to Brigham and Womens to wait with my sister in-law. Things went so well, he didn't even take any pain killers after. A month later riding his bike and golfing again. BTW - I did see the Ted Williams case - I had to stop down there to get the contrast to drink before this scan. Just finished round 2 of Sutent. What are they doing with your husband? I wish there was some way we could make contact.
Peace and Prayers To All

Sent by Shaun | 10:15 PM | 6-18-2007

Dear Leroy,
I've been reading your blog sporadically the past months and have always picked up words of wisdom to live by. You are in my prayers tonight.

Sent by Tricia | 11:45 PM | 6-18-2007

Dear LeRoy and Stephanie,
My heart is hurting for both of you and I know you are both in very difficult places. But don't give in and don't let the statistics intimidate you.
I was diagnosed with stage 4 serous papillary carcinoma of the uterus with mets to omentum and both lungs. Chemo had a less than 30 % chance of being helpful and there was no talk of a possible remission. But I did take the chemo route, as the cancer was too wide spread for radiation to offer any hope.
On my appointment in May the results of my PET Scan were entirely negative. I am in complete remission and it surprised even the doctor. So good things can happen even when the deck seems to be stacked against you.
The Chemo was difficult but a lot of the possible side effects never showed up. I pray that what ever treatment you both pursue the results will be as positive for you. The main thing is to hang tough and know that we are all in this battle together! My thoughts and prayers are with you both. And Stephanie, have a blast at your son's upcoming wedding! With Love and Prayers, Eileen Pruyne, Charlotte, NC

Sent by Eileen Pruyne | 12:21 AM | 6-19-2007

For Leroy and everyone who was on the show or could have been on the show or watched the show or has posted and for those of you, especially, who have not, you have demonstrated it is possible to have cancer and still be who you are. Isn't that what Leroy has done - he's a journalist whose stories over the years have affected millions of people. He got cancer, and he is using that to write stories that affect millions of people. You are using your cancer by writing your stories to affect people....you are still who you are - before cancer - how you express it - and Leroy has given us a chance to affect people - what is more powerful?

Sent by jmh | 1:43 AM | 6-19-2007

Leroy,

My heart goes out to you. I pray that you seek God's advice.

Sent by Betty in Germany | 3:16 AM | 6-19-2007

Leroy: I spoke with a dear attending of mine here who knows the people in Gainesville about your case (or what I could put together...although as you know I don't have your medical records).. for what it's worth, I think, if you wish, you should see about proton therapy.

Cliff's note version: Proton therapy are x-ray beams which are extremely conformal to areas (such as the spinal cord, eye, 'high real estate') areas...they have a special dose 'fall off' that makes it more conformal than electrons or photons which are normally used in 99% of America. Protons are used mostly in pediatric tumors, as those brains/structures are developing, and sometimes other areas. They are very VERY costly centers to build, hence not available like bread and butter everywhere. Not everyone is offered protons, they undergo a rigorous screening (or so i'm told)....I don't know for sure...but if you want to look into it.. there are centers in Loma Linda, CA, Jacksonville, FL (assoc with Univ Florida), Mass General, MD Anderson recently opened a center in Houston.

Hope this helped.
(yes Robin, i'm female, and thanks for your kind words..)

Sent by Krupali Tejura MD | 8:37 AM | 6-19-2007

Leroy,
When I read this entry the other day, I just had to take a day to process all the emotions involved with making unfathomable decisions. When my best friend was faced with making similar decisions for her Stage IV colon cancer which had "met" to her brain and engulfed her lymph nodes, I just was paralyzed with fear for her. That was then. Now, I can see and understand why people select options that appear to be non-options. Sort of like behind door number one, you get a flamethrower full face; door number two, rotating knives ... you get the picture. Whatever you decide will be right for you. And, maybe you might check out some CAM to augment that decision. I keep you in my meditations daily.
Stephanie - enjoy the ride how ever you can. Pat Z.

Sent by Pat Zalewski | 10:10 AM | 6-19-2007

Dear Shaun,
Thanks for asking he's on his 1st round of Sutent today completes 1 week & the side effects are hitting him pretty hard. He feels much worst than before he started meds but had been fortunate not to feel the effects of his cancer until now. He too had surgery , kidney removed at Brighams & the surgeons were brillant & his recovery was amazing! Not so much good for now with the Sutent but we are hopeful as his doctors are waiting the newest drug for RCC just FDA approved to become available. Our team of oncologists are some very special caregivers, too. I would be happy to have you contact me/us at cynstmr@yahoo.com for more renal cell & Boston sharing. Meanwhile blessings to all.

Sent by cyn | 11:55 AM | 6-19-2007

oh Leroy, your podcasts are getting to me but please don't stop! I wish you strength to make the decisions you need to make and peace with the outcomes.

Sent by Julie | 1:51 PM | 6-19-2007

Stephanie - What can I say - I am here crying. We knew this was a possible outcome for you. Thank God your son is on his way and there will be some joy to look forward to. I feel we have become friends through our emails. Take comfort for all who are sending you prayers and well wishes now. They will let you know at least for a little while you can read how people are connecting with a perfect stranger. There is good in the world and Leroy has set up a great way for us to show you, him and anyone of us that people are good and care for those in need.

Sent by Cathy | 3:01 PM | 6-19-2007

As much as we like to think there is a magic bullet, there is no such magic bullet for cancer. We want all our medical problems to be like the antibiotic model: take a pill and kill the ill. But it just doesn't work that way. Even the oncologist on your tv show said he'd lost 80% of his chemo patients within the last year. (I would have fired him on the spot, anyway, for his poor attitude.) Chemo doctors really buy into the hype on the expensive drugs they prescribe.

Sent by Kevin | 7:32 PM | 6-19-2007

Leroy, thanks again for taking the time to share your thoughts and agonizing decisions with all of us. I am thinking about you and praying that you find comfort in whatever decision you make. None of the choices are good and the situation is very scary, as all of us in the club fear that we will someday be in your position. Enjoy the day, have a chocolate chip cookie with milk and do what feels best for you.

Sent by Lou Loggi | 7:57 AM | 6-20-2007

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