When you boil it all down... hope is all we have or need..............

With hope we can deal with incredible hardships and keep going.....

Even "pretty slim" leaves room for hope......................

Sent by Ron Bye (NH) | 7:53 AM ET | 07-10-2007

It was great to hear Laurie's comments.

Interestingly the only reason they would do my most recent surgery is because "I realized that it was not a cure." So if I had not looked at the surgeon when I met with him and honestly said, "I'm just trying to buy time" they would have let these tumors kill me? I know this disease will kill me and I know it is going to be a difficult road but I've had two great years that I didn't expect to have and am looking forward to a bit more time. During the last two years I could pesimistically say I've had 14 months of chemo and three surgeries but I see it as a time I have handled chemo while having some wonderful opportunities at work, traveling to Canada, Paris,and Greece. I look forward to continuing to advocate for the homeless, work for peace and have a trip to Spain planned for September. It may be downhill from here but I intend to enjoy the ride as long as possible. Peace to all!

Sent by Dona | 8:11 AM ET | 07-10-2007

Dear Leroy, How wonderful to have Laurie to show the side of hope. My husband is like that too. We all need someone like that. We, your readers have hope too because you give it to us with your writing. Thank you.

Sent by Vicki (FL) | 8:16 AM ET | 07-10-2007

Hey Leroy,

Maybe Laurie can start a blog for caregivers? I liked reading what she has to say because I am right there with her. He (my husband) has Stage IV and looks great and feels great but its Stage IV. Ugh.

Thank God for both of you. I'm not alone.

Sent by Sarah Senter | 8:28 AM ET | 07-10-2007

This is so interesting to me. When I switched my mom from small-town, impersonal satellite treatment to a university hospital with very warm, hands-on care, I went with her to her first appointment. It was bad news. Even with successful surgery (they weren't even sure they could perform the surgery) the doctor said she had a 20% chance of being cancer-free. She did really well, beat the odds, but when the cancer returned at some point, she talked about how that doctor told her she had an 80% chance of having no cancer! I think she heard what she needed to hear and it actually enabled her to survive. It almost makes me laugh to remember how differently we interpreted the information. I'm glad it was me who was terrified and she who was optimistic! Be like my mom, Leroy.

Sent by Mary L. | 8:31 AM ET | 07-10-2007

Good morning Leroy,

I teach a surgical technology program, and one of the topics we discuss early in the program is the patient. I actually show the movie "The Doctor" starring William Hurt. It gives a wonderful perspective to being a patient, and putting the shoe on the other foot.

Anyone who is delivered a unpleasant diagnosis, or treatment options immediately shuts down. It is important to have at least 2 people present to HEAR what the doctor is saying and if necessary make notes. I doubt at that time, the patient is moving ahead with the next set of questions, however, having the other person present maybe that is happening.

I have had to consider options, and be the one to ask the questions. It has been that way since November 2005, for my sister, although now I do admit is less my job. I try not to waste the doctors time, I may have to go back after having done my research and written my questions, however, I WILL get answers. All anyone wants is answers to questions that may not always be simple. Families need information to prepare. There are many choices, options that may have to be taken or made.

Your message today really moved me. What a wonderful partner you have and what a wonderful support system you have built.

Thank you!

Sent by Susan Chap | 8:32 AM ET | 07-10-2007

What a great blog! I love the story about Mrs. Clark, and I love hearing from your partner!

Our perspective is so important, and is probably the one thing within our control. I try every day to keep pessimism out of my head. Sometimes I'm successful! I know that I am alot happier when I can put a positive spin on what is on the table to deal with.

I was grateful to hear from Laurie. I know from seeing the 'Town Meeting' that she is a very private person, and doesn't take readily to sharing her deepest feelings.

Please thank her for us.

Sent by Sandra Shuler | 8:49 AM ET | 07-10-2007

"...hope can change the way we see and hear" - wonderfully put. As usual...

Lesa

Sent by Lesa | 8:49 AM ET | 07-10-2007

The prisms through which we hear and see will sometimes conflict with the facts! Perhaps in our cancer world, this is due to our primal instinct for survival. Perhaps it is due to the words our oncologists use to describe our current situation, our next steps and possible outcomes. Perhaps what was said was not what I heard (the prism again). Regardless of the facts, the words used or the words heard, HOPE is the fuel that drives our spirit and soul. It is our essence. It is omnipresent within all of us. It is with us even if cancer were not a part of us.

The opposite of HOPE is DESPAIR. I have felt both. Even when Despair seems to overwhelming, there is that little flicker of light called Hope that resides in our heart. If given a chance, it can temper the feelings of Despair and perhaps rekindle our energy, our fighting spirit.

I do know the difference between reality and Hope! However, I don't see them in conflict with each other. The reality may be grim but it doesn't mean that the little light of Hope cannot burn within my heart.

Leroy and Laurie, continue to keep the little light of Hope burning in your hearts. It will be a blessing to you both.

Blessings and prayers as always.

Sent by Al Cato | 8:52 AM ET | 07-10-2007

Dear Leroy,

This was an extraordinary piece. Thank you, and Laurie, for sharing.

Sent by Rena Janus | 9:07 AM ET | 07-10-2007

Leroy, again, thank you.
Laurie hit it all with me as well. I am the caregiver. My fiance has stage IV lung cancer and neither of us are ready to give up the fight. We have a 3 month reprieve. We have a great future ahead of us. We just won't let cancer take the lead....
Sarah just said it best..."we are not alone" and I thank all of you for your support in our fight! This is one heck of an army!!!

Sent by Laurie H. | 9:09 AM ET | 07-10-2007

I think that I found that I'm more hopeful, and dealing with my situation with more equinimity than my oncologist was. We had a discussion the last time that I saw him about our expectations, since I've been in remission for nearly a year from stage IV breast cancer. He doesn't like to have to order scans, since they're "only looking for trouble", but knows that he has to. I'm OK with doing scans twice a year, and am not worried about them. In part, I have a gut feeling that I'm going to be in remission for many years, and in part because I am in a place where I'm not pooping all over today by worring about what will eventually happen in the future. Of course, as we all know, there is nothing much that's predictable in Cancer World with real certainty, but that's my story and I'm stickin' to it. Laurie and Leroy, keep hope alive.

Sent by Nancy K. Clark | 9:16 AM ET | 07-10-2007

I too appreciated Laurie's input today. It shows us another side of you too, Leroy. My heart goes out to both of you....to all of you out there dealing with this disease!

Sent by Vicky (NY) | 9:34 AM ET | 07-10-2007

Leroy, this exact topic came up last night when I showed my husband my list of questions for the doctor tomorrow. He reminded me that I don't always hear things correctly, and that's why he's there, to listen and remember for me. He agrees that my questions are valid, but doubts the doctor will go beyond the here and now, especially since I'll be having an MRI on my brain at the end of the month.

The results of that could make a heap of difference as to my future treatments. How was I so blessed to get a husband who is there for me every step of the way? Oh please let me hear well and write down answers so that I'm not so confused. Thank you Leroy. Your posts always help me to think more clearly. Thanks Leroy and everyone for saying the things that help create a more meaningful dialogue. Jill

Sent by Jill Schaudt | 9:34 AM ET | 07-10-2007

Leroy and Lori, I have been there. I look back on my husband's cancer battle in three stages. At first we fought like crazy - searching, researching, traveling, trying anything to defeat what we were told would be incurable cancer. John appeared healthy and we struggled to deal with the reality of our threat. Then we got to a stage when he began to look and feel sick. We dealt with new limitations and new emotions. We became closer than we ever knew was possible, did what we could to protect, prepare, and comfort each other. We reached a maturity that I can't explain, but will never forget. The third stage was letting go. We focused on the immediate, small comforts. No more trips to the doctors, no more struggling to do the impossible. Fear slipped away. We were surrounded with love and support. Thanks to wonderful hospice staff, John's pain was always manageable and there were only a few days when he actually didn't get out of bed.
Each stage had unbelievable challenges and tender rewards. I was always proud of us and what we were learning about living and dying. We went almost the whole way together and I have no fear about my own eventual journey. He showed me how to do it.
It's a little like President Roosevelt said, "we have nothing to fear, but fear itself." Can we talk about dying? It is an almost unspeakable topic in our culture. We have helped each other deal with treatments, hope and uncertainty, insurance nightmares, social stigmas, etc. Can we help each other deal with death? We all will die. It's in the back of every cancer patient's mind, but it's the elephant in the room that we all try to avoid. I know that many will survive cancer and no one wants to come to an acceptance of the dying process when they should still be fighting. But some of us won't beat this and are surrounded with fear. Can we help each other with those unspeakable feelings? Let's take some of the mystery out of it and step into this uncharted territory. It's a path that eventually we'll all be traveling.

Sent by Laura | 9:34 AM ET | 07-10-2007

Leroy,

Thanks for another wonderful gift this morning. I am always amazed when my husband and family tell me what they heard the doctors say. It is so different than what I hear.

I have experienced that when I feel hope I also feel light and joy. I laugh more.

May you and Laurie experience light, joy and laughter today. Thanks again.

Sent by Laurel M. Jones | 9:39 AM ET | 07-10-2007

Thank you so very much Leroy and Laurie. Just the message I needed this morning.

I awoke in a full-on panic attack -- heart pounding, palms and feet sweating, gut churning. It happens so rarely that at first I didn't recognize it. Was I sick? Was it just the after-effects of last week's chemo? But then I realized it was just all my old fears coming back to visit me. I don't have to list them here -- you all are plenty familiar with them. How odd, though, that they chose to re-roost in my brain first thing this morning. The only thing that can get me through this panic (besides Xanax, of course) is prayer, my pleadings to God, the love of my family, and hope. Hope that it's all working and that my job is simply to survive the treatments.

Sent by Jordis | 9:40 AM ET | 07-10-2007

As a former caregiver (we lost the fight Feb 07) I can totally empathize with Laurie. Even to this day, it feels strange at the end of the work day coming to an empty house that no longer feels much like a home.

Sometimes hope is all that keeps us going from one moment to the next. The alternative can be too much to take.

Sent by Bruce | 9:41 AM ET | 07-10-2007

Laurie's role is to balance. If one is overly optimistic, the partner may need to hold onto facts and reality. It would be too dangerous emotionally to have both too optimistic and unprepared for the unpredictability of cancer or both so based in the predictions, statistics and facts that there is no hope or lightness through it all. I'm glad she gets to be the one with the hope this week. You are both lucky to have one another.

Sent by Sandra Li | 9:45 AM ET | 07-10-2007

Hope is something that will keep people chugging along...

I hope to never ever make my patients lose their hope. Sometimes it is all they have.

Sent by Krupali Tejura MD | 9:51 AM ET | 07-10-2007

I think we all make sense of hope in different ways, depending on where we are in the cancer journey and where we are in our own life journey.

The link that I'm including is from a marine biologist and a Buddhist teacher. She was initially dx'd with stage III colon cancer that has now spread, again. I remember visiting her when she was in the hospital, and very sick from the chemo. I had brought my young daughter (age four) -- because I thought that, after a week of treatment (and a week removed from the chemo), she would be better. She was not even able to get up.

Anyway, it's a youtube video and I thought it might resonate with some.

http://www.youtube.com/watch?v=5y9JR8u1XhY

Sent by Jan | 10:03 AM ET | 07-10-2007

I think that I found that I'm more hopeful, and dealing with my situation with more equinimity than my oncologist was. We had a discussion the last time that I saw him about our expectations, since I've been in remission for nearly a year from stage IV breast cancer. He doesn't like to have to order scans, since they're "only looking for trouble", but knows that he has to. I'm OK with doing scans twice a year, and am not worried about them. In part, I have a gut feeling that I'm going to be in remission for many years, and in part because I am in a place where I'm not pooping all over today by worring about what will eventually happen in the future. Of course, as we all know, there is nothing much that's predictable in Cancer World with real certainty, but that's my story and I'm stickin' to it. Laurie and Leroy, keep hope alive.

Sent by Nancy K. Clark | 10:16 AM ET | 07-10-2007

My friend Sonja asked me to accompany her to her initial Oncology visit after her lumpectomy for BC. Knowing she would not hear anything after the word cancer was spoken, I agreed . To be certain that I was getting it all right, I wrote down everything her oncologist said; type of chemo, duration of treatments, radiation, tumor size and so on. She heard her oncologist say that she had no cancer and that the chemo and radiation were merely preventitive measures. I wrote that the tumor was 2.5cm and was extracted by lumpectomy because Sonja had made the choice NOT to remove the breast. She is almost finished her chemo and will be starting radiation soon. Ask her if she has had breast cancer and she will tell you no, never had it. We hear what we want to hear because it is what allows us to function in the Cancer World.

Sent by Liz Zimmerman | 10:22 AM ET | 07-10-2007

Hi Leroy, I'm still half asleep, on cuppa number one. All I can think while I read this was I am glad you are not alone. Hope kinda stinks that way sometimes, it won't go away. Sometimes hope can pull you in two when you want to give up. Love of life seems to have pulled my old cat back from the brink of death...acute kidney failure. In pre-grief, I started to let her go outside, something I had not previously allowed. Weak and wobbly, she would lap water from the dish near her head and just enjoy being in her natural habitat. In a few days she was exploring, and even chased another cat out of the yard (no teeth, can hardly walk). Now she hollers at me to Get Up so she can go Outside. Her leg muscles, though weak, get her where she's motivated to go. She doesn't know she's supposed to die. And she's having too much fun doing what she loves. http://www.xanga.com/butshebites

Sent by Alycia Keating | 10:26 AM ET | 07-10-2007

This one made me cry. Sometimes I've tried to push my husband to have a "realistic" discussion about where this is all likely to end. But like Laurie, he's not going there. Can't do it. So we both silently collude in a bit of denial. Hope is a beautiful thing!

Sent by Doris | 10:32 AM ET | 07-10-2007

Laurie
I know you're having a rough time, my love and prayers go out to you.

Sent by Irene | 10:39 AM ET | 07-10-2007

I appreciated Laurie being willing to share that journal entry. My husband has often heard totally different things from what I hear when we have both gone to my doctor appointments. And sometimes this has not been easy for me as I felt he was in real denial about the harshness and necessity of the treatment I had to fight my cancer(s)--and that was at a point where I wanted someone who would understand how hard it would be, in order to be ready to support me. Not someone not understanding that and also wondering aloud if I really needed the chemo as well as the radiation.

On the other hand, we have not been in the position you are. My cancers were both early stage and I now am cancer free (as far as I know and until the next checkup anyway), just suffering from disabilities fom the treatment. My husband also is kind of unrealistically hopeful about how those will resolve.

But perhaps if the news were grimmer, I'd appreciate that denial/optimism more. Honestly, I hope we never have to find out. But again, thanks for giving me a new perspective on this.

And keep hoping.....

Sent by N.R. | 10:40 AM ET | 07-10-2007

Hi Leroy-

I've been thinking alot about hope lately. I'm stage IV primary liver CA, very close to 4 years past my initial diagnosis, experiencing NED, defying the odds. My docs have used the "M" word (miracle), which makes me uncomfortable. Miracle perhaps, but it just seems more like I don't fit their expectations. I'm very grateful to not be living by the statistics.

We're burying my 89-yr-old father-in-law this week. He had a good long life and it was wonderful to be around to care for him and be a support to my husband. A different place to be--the caregiver and one to arrange funeral details, etc. Again, I have so much gratitude for these 4 years.

Back to hope: I ran across a poem by Emily Dickinson about 3 years ago when I was in great despair, very sick and recuperating from a de-bulking surgery along with a resection of over 1/2 my liver. These lines got me through a very dark time:

"Hope is the thing with feathers
that perches in the soul,
and sings the tune without the words,
and never stops at all."

Let's never stop hoping.

Sent by Nancy | 10:43 AM ET | 07-10-2007

Hope is one thing, no one can take away! We just found out Monday that my husbands small cell lung cancer has spread to the pancreas, and He has many brain mets, right now he is doing the whole brain radiation, then we are going to do some 2nd line, clinical trials, we have hope that the radiation will get rid of all of the tumors, Dr. said if not and there are more than 3 left, they can't do gamma knife, and the cancer will take him quickly, so He did not mention the pancreas involement to us, we had to find it on a scan, my husband was very upset and told the Dr. he wants to know everything...devasting so I cried for a week, now im back in survival/fight mode! we are never giving up hope for it is all we have

Sent by Karen | 10:48 AM ET | 07-10-2007

Leroy:

This has been the most moving blog I have read to date with one of the most basic lessons in life.

My daughter is prearing for her first treatment even though it has been almost a year since the first diagnosis. So . . .we are just starting this treatment phase of the cancer journey and it is really frightening. I have moments when I just cannot believe it can be true because I look at her and she is so beautiful and seems healthy. And other times the helpless feelings are so overwhelming that I have to just shut it out . . . DENIAL! I am sure this is just normal human nature.

Thanks to all of you who spread hope and light to the rest of us. This is a wonderful place to visit each day!

My prayers and blessings are with each of you.

Sent by pe | 11:11 AM ET | 07-10-2007

Leroy,
I am that extra pair of ears in the room for my husband who is being treated for NSCLC. I wish that everyone had someone to be there for them. I feel deep sorrow for those patients out there, taking this on alone.
Sometimes the news is too overwhelming to hear and/or we are given too many thoughts to process. I try to take notes as the MD's speak. Sadly, I often have to quote these notes back to remind them of where we are or what he has said to us in previous visits.
Our oncologist is not proactive in ordering scans to watch for any mets or reoccurances- I'm not sure if he thinks of it as "looking for trouble"- but we want the option of an early intervention?!?!
We still believe that there is good reason to be hopeful. Sometimes I think that they (the oncologists) loose that hopefulness and forget that we need to have it.
I am NOT ready to stop being an advocate for my husbands life either!
thanks for the great post!

Sent by Deb | 11:49 AM ET | 07-10-2007

I love Mrs. Clark's teaching method and so appreciate that Laurie let you share her journal entry with us. What perspective and self-awareness you and Laurie both have! How lovely that you have one another through good days and complicated times alike! And hope is a custom-defined commodity, I think. John McCutcheon's newest CD has a song with the line "Hope Dies Last" that comes to mind reading today's entry. We are constructed that way, perhaps?

Sent by Sarah | 11:54 AM ET | 07-10-2007

I remember when I left denial and went into acceptance mode. It was January 11, when the doctor said to us "the treatments are no longer working, and a decision probably needs to be made." Terry simply said "I've been treating to live, not living to treat, and if it has to be the other way around I'm finished here." Of course, I was stunned, and the first time I heard myself say the words "we need to make out a will" to anyone (my boss and coworkers that afternoon) it was almost too much to get out.

The last 5 weeks were a time to get affairs in order, make peace with the past, say what had been left unsaid for two decades, and basically spend as much quality time as we could with family and friends around us. We had decided a couple of years ago that we would no longer say "we'll do it tomorrow," because we became aware that some day tomorrow wasn't going to come. We traveled a lot, denied ourselves nothing, and enjoyed the time until we no longer could do it physically.

As Laura posted, it's definitely a journey and each leg of it has its rewards and sorrows. I wish it was a trip we didn't have to take, but we all indeed eventually will.

Sent by Bruce | 11:57 AM ET | 07-10-2007

Leroy (and Laurie),

Mrs. Clark was absolutely correct. Part of what we see depends on where we are standing, our viewpoint. The viewpoint colors what we observe.

This seems very important to me because I may not be able to change what is shown and said, but I CAN change my viewpoint and that means there is the possibility of an easier ride through cancerland.

And remember, wherever you stand, it's okay to be there. No right or wrong here.

Laurie, I have been where you are and observed my deceased husband literally not hearing the doctor say "This is a terminal condition." About four weeks later, he looked at me while we were having dinner and said, "Did that doctor say I was going to die?"

In my case, I was not in denial; he was. I gave him a concrete answer to his concrete question and we went on from there. I have thought since then that I would tape record sessions with my doctor if I get cancer.

Sent by Diana Kitch | 12:05 PM ET | 07-10-2007

Leroy and Laurie, I am Stage IV also, Renal Cell. My wife and I have the same perception issue with which you seem to be dealing. I see black, she sees gray. Now, I am not a pessimist, but she is the optimist. We are working our way through this thing life has dealt us. It is very difficult, she expects me to beat cancer, the way I have beaten other medical issues throughout my life. I hear Stage IV and think, well I'll fight hard, but eventually cancer will win. I still look okay, and feel reasonably well, but I know this is probably the calm before the storm.

We all meet so many people during this process, Doctors, Nurses, other care givers, and when they are talking , I can see in their eyes, they know! Kathy doesn't see it, or doesn't want to see it. This makes it all the harder on me, she is so far in denial, I can't really talk to her about the important things, things she will need to know.
You made me cry today, not your fault, the subject matter we deal with day in and day out jumps up sometimes, and just makes you cry. I love you both for doing this. Stan

Sent by Stan Wozniak | 12:18 PM ET | 07-10-2007

hello all,
thank you jan for posting that AMAZINGLY wonderfully beautifully done you tube video....i am speechless!

Sent by marianne dalton | 12:45 PM ET | 07-10-2007

Thank you Laurie for allowing Leroy to share your thoughts with us. My husband, Jeff, and I often switch "roles" between optimist and being scared to death. In anticipation of our move this fall, we are meeting with a new doctor here in St. Louis. Today we are both scared. Will he give us some different outlook than my current doc or does it really matter? For all we now know about my uterine LMS, what do we not know? Jeff and I will probably both look to each other to be brave, but inside I know we will both be worried. Even so, I can't imagine not having him there.

Sent by Ellie Algatt | 12:49 PM ET | 07-10-2007

David White - the biliary cancer drug is PCT-11.

Leroy - My husband is like Laurie. It sure is helpful day to day. I quickly researched this new drug they're going to give me and discovered it works for 8% of those in a trial, 40% got an extra 10 months. I've been aware that it is usually this way with my chemos, but my husband hasn't. I credit my doctor with this head cheerleader role to make me think things will work for me. My oncology nurse is pretty terrific too. I've got a bunch of people helping me. And I easily arranged wheelchairs for myself during our flight travel next week. I hope I can deal with the words "it's not working anymore" much later than sooner.

Sent by Cheryl McDowell | 12:53 PM ET | 07-10-2007

Please everyone take the time to watch the youtube video Jan recommends. It is simply awesome. You will find some peace there today I believe.

Sent by Judy | 1:14 PM ET | 07-10-2007

Leroy and Laurie, what a team!! I definitely needed this dose of hope today as I continue my fifth round of chemo. I lost hope in a friend who I thought was by my side for the right reasons and regained hope and strength in my marriage and my children recently as they continue to stand by my side and take all this cancer has to give with a wink and a smile for me. I don't want to look around the corner, I will get there soon enough. Best and thanks for this wonderful forum once again, Estelle

Sent by Estelle | 1:29 PM ET | 07-10-2007

Dear Leroy,

Too stunned to write now, and I am sure you are probably surprised at my being speechless.

I can only say what a gift you have in your wife and partner, who loves you dearly. I am proud of both of you and happy you have each other to keep you anchored.

My heart hurts and I will write later.

Love, Briana

Sent by briana | 2:15 PM ET | 07-10-2007

Hi, I have stage IV cancer as well & I'm scared ... I try to stay strong & focused but most days are horrible. I have a cancer blog called "I Will Survive" http://www.day-without-rain.org

Sent by Sandee | 2:25 PM ET | 07-10-2007

Dear Leroy,

I am struck by what a bittersweet blessing it is to have someone love you so fiercely that they just won't let go. We all need someone like that, and you are so lucky to have Laurie, even though she is going through the hell along with you. I'm sure she wouldn't step away, even if she could. And Laurie, keep hanging in there. It ain't over till it's over. God Bless and comfort you both and everyone here who continues the fight.

Sent by Connie | 2:54 PM ET | 07-10-2007

An alternative to hope, especially false hope, is acceptance. Laura said it so well.

Sent by Stephanie Dornbrook | 3:09 PM ET | 07-10-2007

Hi Leroy, Hi all in "cancer land". ... Now I feel like saying "follow the yellow brick road" and "don't pay any attention to the man behind the curtain" lol. Hope, yes, I am glad for hope! I'll probably have hope til the end and even then, I'm sure I'll hope that there is a place the soul goes and can keep an eye on the ones you love and maybe even reach out to them in a small way to let them know I'm OK. I have stage IV follicular lymphoma. It's now in my bone marrow. I asked my protocol nurse what that meant and am I now considered stage IV. She said yes I am stage IV and all that means is like saying you have curly hair or something... she said it means nothing. But I think she was trying to give me "hope". So... "pay no attention to the words behind the diagnosis... there IS always HOPE! " Now I'm going to click my heals together and say "there is no place like home... no place like home" Carpe' Diem! Shirl Dolitz

Sent by Shirley Dolitz | 3:18 PM ET | 07-10-2007

Leroy and Laurie,
Thank you so much for your shareing with us today. My husband and I are in the same position. I read this blog everyday and always feel so much better after reading your comments and those of the many special people writing in. Thank you again. Dorothy

Sent by dorothy | 3:26 PM ET | 07-10-2007

Cheryl McDowell,
Thank you for the drug name. Good luck with your treatment! You are in my prayers. HOPE IS A GREAT THING!!!
David White

Sent by David White | 4:03 PM ET | 07-10-2007

At the recent Relay for Life I heard a lot of talk about hope and wondered, "Exactly what are we hoping for?" The disappearance of tumors? A return to our "old lives", the lives that gave us cancer? Hoping we'll feel no pain? Hoping to find a world where we will all live happily ever after?
In my view, hope is a wish, where as optimism is an expectation based on evidence. I'm optimistic that I'll cope with the pain because...I've been practicing!I have no control over the treatments avaialble and no clue as to their effectiveness. But I do know what I can do, and I think you also know what you can do. So sit and wait, if you have to, but I applaud your desire to proactively move forward. To me, that's not hope, that is optimism - truths you've learned about yourself over the years. Those truths tell you about what you can and will do. Keep moving forward and give Laurie a hug for sharing with us.

Sent by Survivor1953 | 4:21 PM ET | 07-10-2007

Jan: I add my thanks to that of others for the youtube video link. What an articulate and amazingly thoughtful woman she is!

Sent by Sandra Shuler | 4:31 PM ET | 07-10-2007

Laurie and Leroy,

A beautiful post that shares much heartfelt feeling. It's wonderful that the two of you are willing to open your lives and light the way for so many of us that are on a similar path. Your story reminds me of a thought from Keith Lyons at CancerCare. He once told our support group "that life happens between our own two ears." Any given situation can hold as much or as little hope as we allow but it is up to each of us to find our way. It has become a very meaningful meditation with my daily walk in CancerLand. The truth is that every one of us, from perfectly healthy to Stage IV, is only gauranteed NOW and nothing more. It is the wisdom of Stage IV and the possibilies that it brings that shape the way we live and the determines the hopes that we develop. This realization has empowered me to do things that I would have never before thought possible - speaking out about hope and support, lobbying Congress, and making ordinary moments with my family extraordinary memories. Thank you for once again voicing that there is indeed hope in the hopeless. Our own reality makes it so.

Sent by Suzanne Lindley | 4:34 PM ET | 07-10-2007

Leroy, I read every post you make. I have enjoyed and found inspiration in so many of them, but I have never felt the need to post a comment. Your entry today has been an exception. My mother called me on April 10, 2006 to tell me she was "sick", and that she was due to go to John???s Hopkins for tests in a few days. She never told me what was wrong with her, just that she was sick, and that she would know for sure what was wrong after the tests. She told me that she was having so much back pain that she finally had to break down and go to see a doctor. My mother was never one for doctors and now all of a sudden she was getting bombarded by them. Over the next few weeks, and many trips to Maryland from Texas, I don???t ever remember hearing the word cancer, not from the nurses, not from the doctors, not from those visiting her in the hospital. I don???t even remember the hospice nurses saying anything when she was finally allowed to go home. I know she never actually said it to me or around me. It seems like everyone just assumed, or was afraid to say the ???c??? word. Was it just me; was this the way I witnessed what was happening to my mother? Did people actually say the word and I tuned it out? She died from cancer; I know that, in her pancreas, liver and lungs, on May 5, 2006. Sometimes I think to myself that maybe her death was just my imagination too because everything happened so fast. I hoped for a long time that that was the case. No one ever said the word, maybe she never died. I miss her.
- Andrea Dixon, Houston
Ps, I blog my thoughts on cancer and memories of my mom at http://andreascyclingchronicles.blogspot.com

Sent by Andrea Dixon | 5:22 PM ET | 07-10-2007

Laurie
Thanks for your insight and reflection. I too am a cargiver for Stage IV (esophageal) cancer patient, my 50 year old husband and everybody around me has commented on my strength and the fact that "if I ever get sick, I want you as my caregiver". But, I too need someone to talk to who understands what I am going thru as I go through the roller coaster with my husband.
Thanks for including a caregiver's insight.
Nancy J

Sent by Nancy I Jordan | 5:27 PM ET | 07-10-2007

When my husband was first diagnosed, he did not want to discuss much of anything. During the course of standard treatment, I sat with him, listened and took notes. Things got a little better and our doctor offered some hope. Then one day, he looked at my husband and said: "I do not know what else to do for you." My husband heard that he was simply going to die. I heard, that the doctor had tried all that he knew to do for my husband's particular cancer. I assumed we would discuss other options, a 2nd opinion, etc. but I never heard that it was time to quit. I gave our doctor information that was passed on to me by our local chapter of the Leukemia and Lymphoma Society about a clinical trial at a teaching hospital 400 miles away. Our doc flew out of the exam room to make that first call.
By the time we went for our first interview for the clinical trial, my husband looked worse and could not even walk. Our new doctor after listening to our story and reviewing my husband's charts said: "I do not see where there is a problem." He proceeded to outline 3 or 4 options for treatment.
I literally felt a "dread" lift off my husband's shoulders. He started getting better before the first treatment even started! He lived 2 1/2 additional years after starting the clinical trial and became a "different" person -- more open about his disease and life itself. He offered hope to countless other patients and caregivers/family members who were on their own journey. He lived his life and refused to let cancer define him.
He taught me how to die.
Thank you for today's thoughts and lesson. Best wishes/hopes you and to all of your readers.

Sent by Deborah Compton | 5:42 PM ET | 07-10-2007

Hi Leroy,

My comment has nothing to do with today's blog, it's just something I was thinking about today while listening to an audio book. The book is "Tuesdays with Morrie" by Mitch Albom.

I learned of this book while on a training ride for the Leukemia & Lymphoma Society's Team in Training. I am a Non-Hodgkin's Lymphoma survivor and have been involved with Team in Training since I was diagnosed in 2001. I was riding with a young man, Mike Boylan, and asked why he is involved with Team in Training. I always ask this when riding with someone new. Most have a connection with someone with a blood cancer. Mike had a friend die from another cancer but told me how inspired he was by reading "Tuesday's with Morrie". I would not be surprised if you already new of this book.

While listening today I couldn't help but see the parallel between you and Morrie. Two people who enjoyed life, lived it to the fullest and are now facing a life threatening disease. You with cancer and Morrie with ALS.

I do not know either of you but I am in awe of both of you. The strength you show in facing your diseases is astounding to me. I hope that when my cancer returns, and I'm pretty sure it will, I can be as strong as you and Morrie.

Keep up the fight. Ira

Sent by Ira Lunsk | 6:07 PM ET | 07-10-2007

I was a caregiver also, it is good to have a second person to hear all the info the Doc has to give you. My wife dealt with stage 4 breast cancer. When we would see the Doc she would tease him and his nurse and would be her silly generally over the top person that I sometimes found embarassing. When the visit was all done and we would head off for her chemo she would look up at me and ask " How am I doing", "or what did he say". She would totally shut off the bad or medical mumbo jumbo. I would usually tell her " Ah dont worry", or "Things are moving along pretty good". She never asked for total honesty, mainly cause I think she knew and just didnt want the details. She treated the visits as a social function and tried to enjoy it as much as she could. She was stage 4 for 4 years and had a good quality of life. One of the main things I would tell her so her spirits would stay up was what the Doc had said, it was not curable but like other non curable diseases she could live many years with it. Leroy, you too could live many more years with this. I think your blog helps too. It is great that people can write in, tell their stories as well as listen to yours and gain some perspective and some humor as well. Your Blog is really great, keep it up
Dan Friend

Sent by Dan Friend | 8:06 PM ET | 07-10-2007

Dear Laurie,

I am a believer, one of those from the old school, who believes when I commit to a partner, my commitment extends far beyond the responsibilities of day to day life, but to the spiritual connection we share. "For Better or For Worse", brings new memaning when that reality comes into play in our realtionship, something we cannot ever know its true meaning until we are faced with it. Leroy is a very wealthy man to have you stand by his side through all of this, and I am sure he is aware of the value of your partnership more than ever now. There are those who are forced to walk this path without the loving hand, or eyes and ears of a loved one to help us to "hear" properly, or to give us the gift of honesty and have the courage to boldly tell us the truth. This is especially important in the times when denial is the easiest road for us to take, but there are times we need to hear the truth and who better than from the one who loves us the most? More important, you are there to help him through the acceptance of this, too, and your gentle hand, your warm embrace can become the most valuable gifts you can can offer to him now, reinforcing, in the real sense, that you are with him totally in mind, body and spirit and stand by him and with him up to the end of this phase of your journey together.

I do not know if Leroy could even begin to imagine going through this without you, without the love of his friends of long standing and those of us who have only had the privilege of knowing him for a short time through the gift of the internet. He has shared so much of himself with us, allowing us and giving us permision through his honesty to open up and give back, to help others in return. He has certainly given his share of gifts, and I hope he will allow us to play a more active role in being helpers, because I do not know of anyone on this board who is not willing to stand with him and walk through whatever events are to come in the future. I know I am here for him, for whatever reason, and I would like to encourage him to lean on us more and allow us to stand strong with him. His kind words and wisdom have helped me through some of the roughest times I have had to endure in my lifetime, and I do not know the word to show my appreciation for that kind of heartfelt gift.

Your part in this must be so painful for you, but if I can share even a hint to you the level of comfort he must feel knowing you are now, and will continue to stand beside him, then you will understand why I cannot seem to find the words to express how much I admire you for coming forth and showing us the depth of your love and your devotion, your presence, your touch. Hold him tightly, Laurie, he needs that comfort more than anything, and to feel the two heartbeats join together and truly beat as one, as it was surely meant to be.

We are here for you, too, and if you need anything at all, I hope you will not hesitate to come and let us know your needs. Your role is difficult, indeed, and I will vow to you never to minimize my gratitude and my sorrow for what you are enduring just as much as the rest of us, if not more. When the time comes, know that you have offered the greatest gift through your love and support that any human being can offer, and you have done it with such grace and dignity. I thank you, from the bottom of my heart.

He has been our friend and we love him, but you are his love and show him that through being his true friend.

Love, Briana

Sent by briana | 8:17 PM ET | 07-10-2007

Wow.

Sent by Joyce Smith | 8:31 PM ET | 07-10-2007

God bless you and your partner, Leroy. I'm not sure if it is harder to have cancer, or watch the one you love go through it.
My husband is a man of few words, and not likely to talk about the touchy/feely stuff women want to hear. But I will never forget when we were going through all of the paperwork and instructions they gave us after diagnosis. He said, "just don't give up" and I won't.

Sent by Ginger | 9:08 PM ET | 07-10-2007

Stephanie

You have been able to leave me speechless (no small task) with your grace and peace. May whatever god might exist crown you one of the finest of angels wherever we go from here.

Many prayers, much love over the miles...

Sent by Bruce | 10:37 PM ET | 07-10-2007

Day after day Leroy, you continue to impress! Your wit and wisdom are inspiring.

I loved that today???s message was true for everyone in everyday life -- not just those of us living in cancer world. I think most patients need to take a second pair of ears with them when they seek medical help. Aside from the emotional issues involved here, it???s so easy to miss a vital word or phrase.

My heart goes out to Laurie and to all partners out there. As the patient, we tend to be too busy fighting our battle to see what our partners are experiencing. Laurie gave us precious insight when she shared her thoughts.

Laurie, I send you my thanks! Not only for today???s message, but also for sharing your daily dose of Leroy. That???s quite a gift!

Sent by Rhonda H | 1:44 AM ET | 07-11-2007

Leroy, the first lesson with cancer I learned was to separate from my emotions when in the doctors office. All break downs must happen after the good or bad news well after the office visit. I learned this lesson with my first oncologist, who laid my chances out clearly especially if my colon cancer had metastasis to any other organ besides my liver. Totally unprepared for his blunt approach I lost any conversation that followed, it wasn???t until a week later when I had a conversation with my regular doctor who went over the oncologist report of our appointment describe above; that my options became clear and a plan discussed. That include RFA along with surgery.

You and Mrs. Clark are correct that hope can change the way we see and hear, but you may need to add that emotions can blur your vision and interfere with your audio abilities.

Sent by Bonnie Allman | 5:48 AM ET | 07-11-2007

Dear Leroy and Laurie,

Virgie, my partner, and I are deeply moved by both of you sharing your experiences of what is going on. We relate. Our hearts go out to you, and you are both in our prayers. For Virgie, it is helpful to hear the perspective of a partner. She is feeling so alone.

Here's some information I would like to share with you both: my mom is diagnosed with Stage IV endometrial cancer, and it metastasized to her lung, and she has defied all odds and medical statistics and is still alive today, relatively healthy, (except for the "cancer thing"). Her doctor recently told her that she is a "miracle" -- his only patient with what she has to still be alive -- so for whatever it's worth -- take what the medical profession says with big grains of salt, because we are all individuals, and if it bothers you to hear a "tone" that seems to be closing the book on a "stage IV" person, speak up, tell them you are still very much alive, thank you, and you plan on living completely up to whenever the very last moment is, and you would appreciate them speaking to you in tones of hope. Don't be shoved, even kindly into any box that "statistics" want to put you in. My mom is a very strong-willed, stubborn person, you strike me as being like her.

Virgie and I offer both of you our care and prayers and all the healing energy in the universe in whatever form you need it.

Take good care & still heartlight on,
Kim Blankenship

Sent by Kim Blankenship | 8:29 AM ET | 07-11-2007

At the risk of appearing to be a Leroy groupie, this day's insight hits so close to home and in such a timely manner that I am compelled to reply.

A few weeks ago, the oncologist who ran my chemotherapy program last time looked at the results of a CAT scan (without having the advantage of the PET scan results yet) and told me, with family members in tow, that I had 10 months to live, maybe a year or two, that my head/neck cancer had returned and almost certainly metastisized to my lungs. Last week, I saw the ENT oncologist who was also the chief of my team when I had surgery, (and who had the benefit of the PET scan results) and he gave a somewhat slightly more upbeat response (more upbeat if only because more nebulous, if that is worth any points in the cancer game), although it also included morbid curiousity about a spot deteced in my oral cavity.

Coming away from that with an appointment for a biopsy in the mouth this past Monday, I had time to think and decided, based on the conversation (all agree that the lung 'spots' are too small to diagnose) that the biopsy would be a waste of time. My wife, an RN by the way, heard a completely different story.

As we discussed this (and argued and cried, and so forth) she admitted that she heard something where she could build a case that I consider a fantasy: the head/neck spot would be an infection and the lung spots would ultimately be 'merely' emphysema spots, or could be 'wedged' out.

Me, I heard a guy who was simply a scientist and a medical man (a cancer politician, I am thinking of calling people like this :)) who would not give me an expiration date, who held out hope.

But who had no sound reasoning for the biopsy.

Ultimately, I opted out of this until I talked further with the doc (we have rescheduled), but the point is well taken: two people hear the same thing and come away with two completely stories, depending on such things as hope and denial (and, sadly, defeatism too).

Hope and humor, my friend! Keep it up!

Sent by Joe Alvey | 8:46 AM ET | 07-11-2007

Amen brother!

Ya know if we don't learn anything else from this ugly monster we can say we learn true colors of ourselves and those close to us. It teaches us all about what we are truly made of.

God bless Leroy.

Sent by Judy Voller | 12:05 PM ET | 07-11-2007

Dear Leroy and friends,

Boy, I hate it, but I am here again to say I am having another one of those days! You must all think I am a broken record by now, but the truth is the truth. I am stuck in a place now where I have taken a little bit of time away from thinking about myself and what on earth I should do next to get better, and it has been good to focus on others, but I am faced with the reality that the clock is ticking, and I need to do something quickly to get the ball rolling again and get the answers to all of my questions. What is the cancer doing inside me now? Is it quiet and just laying dormant, or is it eating me up inside, little by little - I am at a loss and an impass, I have so much to do and paralyzed to the point where I cannot move for some reason. First of all, I don't feel well, that doesn't help, and I also feel so overwhelmed, like I am in a race but going in slow motion all of the time. It is almost surreal the way I see myself, and I am not happy with what I see either. I know I need to do something quickly, I need to fight, fight, fight, especially if the big "C" is having a good old time running around in there, but I am so tired, I have that "Oh, well" attitude that I cannot afford to have. I am sick of seeking, sick of working so hard to find the proper treatment when I feel like I want to lay down and sleep for about a month, just take some time off from CANCER, but it doesn't work that way does it? I need a cheerleader, someone to help me to push forward from this stuck position I have found myself in, and fight like crazy some more. I think the fear of all of this has worn me out, but I cannot resign myself to it. Has anyone ever felt that way? Maybe, if I try a little harder (although I do not know how to do that) I will get somewhere this time.

My house reflects my mood, it is a mess,
a total wreck, and I do not feel like doing anything to clean, frustrated looking at it, because I do not like to live in all this clutter either. I am in a frame of mind where I do not know which direction to go from here, and I have always worked best when I had a clear plan. This just is not getting me motivated, when I feel like I am spinning my wheels, but I know it will not get done if I do not do it, so tomorrow morning it is back on the phone all day trying to find the right person to go see next. Limbo, what an awful feeling this is!!!

I think my bigggest fear is that I am at the "giving up" stage again, and I cannot do this! I want to live, and I want a reason to want to live. This is a dark place to be, my friends, and very scary, indeed! I think I am here to ask for help again, and if anyone has been in this horrifying phase of not knowing what to do next, do you have any words of encouragement or suggestions how to get myself going again? I know if I give in to the feeling of despair I will soon find myself in a frenzy trying to catch up from the week I have lost in this fight. I am a little afraid of myself right now, I seem to be my worst enemy. I know I need to be more of a friend to myelf, but for what reason, I ask? I know I need a swift kick, but a gentle one, I am accustomed to the mean ones, and think I would respond in a more positive manner if I knew someone cared one way or the other. I hate this dark place, HELP!

I do not like this feeling, not one bit!

Briana

Sent by briana | 10:53 PM ET | 07-12-2007

it IS all about perspective, isn't it? For my husband, who had liver/pancreatic/small cell carcinoma, it was about hearing hope in places i thought it was 'cancer politican/doc speak'. my regret has always been that we could not discuss our divergent views. the fact that he would not allow a discussion on this different told me that he understood how short his time was and how much he hand to rally his internal forces with no energy to spare for making any one else okay with it all. and time was short. in the end, we each held to the viewpoints that made sense to us, that we needed, that fit our different places. i send a huge cyber hug to you and your sweetie who have been able to share views differing.the gift is to keep loving each other no matter how differently you see things. our acceptance of this is another point in the constellation of love.

Sent by cindy | 2:10 AM ET | 07-13-2007