Leroy, thank you for saying the bit about
"its ok to say i'm scared", or i feel lousy. People will often say "you look great!" and so i must feel great then right? no, not necessarily. I am usually hanging on by my fingernails each day. I wish there were more acceptance of the negative feelings as well. We're all supposed to be positive and fight this thing and thats the only way we'll win right? i dont believe in being positive all the time. It doesnt feel natural or human to me. We have so many emotions, we need to let them out, especially if we are going to heal ourselves. And sharing with our family is so important, i feel, even if they dont want to hear it.
jenn from Maine

Sent by Jenn | 6:49 AM ET | 05-16-2007

Amen. I know I could not have made it without the help of others.

Sent by Crawford | 7:14 AM ET | 05-16-2007

My heart goes out to anonymous. Hopefully she will view this space as a "safe" place to share her hopes and fears. I am very open with friends and family but sometimes I need time to process things before I share them. Last week I found out my CEA is rising. I have a scan in about 10 days and will know the specifics then but realize it probably means going back on chemo and of course we never know if this is the time the chemo will stop working. I waited until after Mother's Day to tell even my husband. I just needed a little time to work through it myself. I am now gradually telling friends.

My colleagues at work know I have cancer but because I have been so fortunate as to look and feel good they forget it most of the time. My biggest fear has been being dismissed or not viewed as being able to "be in the game" so to speak. I have always said I want to work until as close to the end as possible because it is what I love and where my passion is.

Today I will cast off my wig for a week in Canada. I will only know my traveling companions and my short hair can viewed by others anyway they want to view it. However, I now know that the wig needs to stay on at work because my hair will fall out again.

I hope you are enjoying sunshine and great weather. I will be monitoring things from Canada!

Sent by Dona | 7:56 AM ET | 05-16-2007

Leroy, when I was diagnosed in January, I did something that was far outside my normal realm of comfort - I reached out, not only to my family but to friends and acquiantances. I was raised a conservative Episcopalian so this was quite difficult for me. I want to tell Anonymous that the outpouring of support from those I haven't really known all that well has sustained me during these long months. I am sorry for you that your husband is having such a difficult time, but please reach out, to those of us here, to your church or synogogue, a local cancer support group. You are not alone!

Sent by Ellie Algatt | 8:16 AM ET | 05-16-2007

Hi Leroy/Hi all, I am a "Cancer survivor spouse". I started reading your blog after the Living with Cancer Documentary and I feel so drawn to it. Even though I am not the one with cancer, I still feel the need to connect with you Leroy and the people on this site. I tell my husband about everything I read but I dont think he is interested in sharing. He, like anonymous'spouse, does not like to discuss things. I have three grown children who are married and our only discussion on a daily basis is "How is daddy feeling today" or "How did the chemo go today" , but never the severity of the disease or the what might or might not happen in the future. Its almost as if by not talking about it, it will go away. I have no one to share my deepest thoughts with up until now.

One thing I would like to share is this. I live in a very big house and now that the children are married and on their own its just my husband and I living in this huge house. I never used to mind it, but now Im wondering about what I am going to do when he is not here ( a thought that destroys me ) I find myself sneaking around and starting to clean house when he is not around; starting to get rid of unnecessary things, throwing them in the trash without his knowledge, so that when the time comes I won't have to worry about dealing with it. When the time comes what do I do first? Where do I start.I dont know what its like to be alone. Im so very scared. Is this "cleaning house" normal? Am I subconsciously rushing his death? I have a friend who recently lost her husband to lung cancer; she does not like to speak about it, but I kind of envy her, its over for her. She can start the healing process. This too makes me wonder if Im normal. I DON'T want to lose him and yet I so afraid of whats to come. It feels so good to finally talk about it...........Im so glad im part of this family.

Sent by sasha | 8:34 AM ET | 05-16-2007

Anonymous' story is indeed very sad. I've experienced how hard it is to be a person with cancer, and I also try to be aware of how difficult a position my husband is in as he somewhat helplessly watches me. This is hell for him.

I empathize with the spouses, family members, caretakers, but there is a limit. People with cancer DO need to talk about their health and what the future might bring. A spouse is the most obvious candidate for this conversation, but what do you do if they are not capable of honest talk about cancer?

I take part in an online support group which is great because whatever is bothering you, from big (new mets diagnosis) to small (what to do when your eyebrows fall out), you can discuss it with others in the same situation. This doesn't take the place of face to face support from loved ones, but I think of it as a pressure valve. I know there are some very good online support boards for women with breast cancer.

My husband has been with me every step of the way through cancer world, but I do notice that he is now getting better and better at talking about the "hard stuff." It's kind of ironic as I'm now in remission, but we've recently discussed such details as what kind of funeral I'd like to have, etc. Some people might think of this as morbid, but it is a great comfort to me.

Maybe Anonymous' husband, who is obviously hurting, will be able to get over himself with time and become a better supporter. Time may be what he needs. He might also need a swift kick in the pants (metaphorically, of course).

Sent by jane | 8:38 AM ET | 05-16-2007

I don't know how I would have gotten to where I am now without the support of my husband, family and friends. I was diagnosed with NHL in August, 2002 and with breast cancer in August, 2006. The fact that I am doing well now I attribute to my wonderful support group and my docs, in that order.
Leroy, thanks for expressing so eloquently many of the things I am feeling.

Sent by Natalie | 9:23 AM ET | 05-16-2007

Yes, yes, many of us I'm sure felt the same way, Leroy. A truly heartbreaking post. How is it possible to get through this cancer journey without support from those closest to you? And, anonymous, tell your husband to write to us too if that would be helpful. There is someone out here who has had the same experiences as each of you, I'm sure. I hope you both find the support you need this day.

Sent by Sara | 9:56 AM ET | 05-16-2007

Dear Leroy,
I am new to this walk with cancer but today's message is so important because at some point, we all need to share our thoughts,the fears and especially the joyful moments that we have.
My husband and my brother are both 30 year survivors of testicular cancer, so how ironic that his wife and I are newly diagnosed with breast cancer. They are giving us their loving support and are sharing in both bad and good days but I know that it's not easy for them to be faced with the unknown. Being a cancer survivor doesn't make it any easier to accept what has happened to someone you love. So,I can imagine how difficult it must be for all the spouses, partners, significant others and families to face the progression of cancer in the one that they love and then to talk about what plans need to be made. I truly hope that "Anonymous" and her husband will find some peace, make the plans that are important to them and find joy in each day spent together....I will think of them and so many others who are feeling the same loneliness.
Your site is such a gift to everyone who reads it and to those who share their feelings,know that you are supported by many people who love you and care how you're doing. Hugs all around....hope they help!!

Sent by Judy T. | 10:02 AM ET | 05-16-2007

I'm exhausted. Still.

Terry's death ended one journey, but started another. Now I find myself adrift, purposeless. Getting out of bed every morning is a struggle and seems pointless. I've got to get the house straightened up and cleared out so I can move. I can't really start the next chapter while I'm surrounded by our former life. Everything brings back memories.

There's not a day that passes without tears. Sometimes they're for me, sometimes they're for the things I did wrong and would do differently knowing what I know now, sometimes they're for lost time that I'd give anything to have back and sometimes they're for the suffering Terry went through. I'm just starting to understand that part of it.

I'm told it will get easier and better with time. I can only hope so. As it is, facing the future alone looks pretty bleak. Sure, I have friends and family, but it's just not the same as coming home to the same old somebody every day, to the life we built in our space. I don't really mind being alone...but I do mind being lonely. There's a subtle difference between them.

45 is too young to die, and 42 is too young to be left alone.

Sent by Bruce | 10:03 AM ET | 05-16-2007

I feel badly for Anonymous. That has to be tough to have cancer and feel that your mate does not care how you are doing.
I have the opposite problem.
My husband has lung cancer and he doesn't want to talk about it very much so I suffer in silence.
In one sense, maybe it is good that he approaches it this way because we try to go on normally each day since he feels pretty good at this time and that gives us hope (perhaps false)that he is weathering it pretty good for now.
But on the other hand, I think it would help me deal with it better if he would talk more about it more and how we will handle things if he takes a turn for the worst.
Reading your blog and others comments about how they are dealing with their particular situations helps me deal with it since my husband does not want to talk much about it much at this time.

Sherry

Sent by Sherry | 10:18 AM ET | 05-16-2007

This is to anonymous as well as to you Leroy. It really upset me as well. Anonymous: Have you brought up the results to your husband? You two definitely need to talk. Leroy is so right, please talk to us, let us know what you are going through, we sincerely care.

Sent by Ruth White | 10:26 AM ET | 05-16-2007

When I read the post by Anonymous yesterday, I cried. And then when I read your comments today, Leroy, I cried again. It's just so sad and stunning how unintentionally cruel people can sometimes be to the ones they love most. SOME men of my acquaintance (in the past) have felt that in order to be supportive, they had to show steely strength. And maybe the only way they can be sure of not breaking down is to remain silent? But when someone is needing desperately to talk, that kind of silence is like a slammed door.My own husband is wonderfully supportive in almost every way, but he doesn't really want to talk about death much. Usually,I don't push him on that. Instead, I come here for those conversations. I hope Anonymous will keep coming back to this blog, where she can pour out her heart and find support. Maybe she could suggest that her husband read it, too. He's probably very scared. That's okay; we're all scared sometimes. But shutting her out isn't okay, in my book.

Sent by Doris | 10:55 AM ET | 05-16-2007

MY GRANDDAUGHTER( 20 YEARS OLD) LIVES WITH ME AND HAS BEEN GOING THROUGH CANCER FOR FOUR YEARS. TWO YEARS WITH CHEMO. SHE DOES NOT WANT TO DO CHEMO.SO HE GIVES HER 8 WEEKS OFF. I TRIED TO DISCUSS THE TREATMENT MR. SIEVERS RECEIVED AND JOHN HOPKINS CANCER CENTER BUT HE DOES'NT LIKE IT. I THINK I SORT OF MADE HIM MAD. ANYWAY HER PRIMARY DOCTOR AGREES WITH ME SO WE LOOK AT IT AGAIN JULY 25, 2007. SHE IS ONE OF THE MOST BEAUTIFUL GIRL YOU CAN IMAGINE. SHE TOOK VIOLIN 10 YEARS, DANCE 16, WORKED DID HER COMMUNITY SERVICE WANTED TO ENTER THE PRILIMARIES FOR MS. AMERICAN BUT GOT CANCER IN HER INTESTINES WHEN SHE TURNED 16, WHEN TO HER COLON WHEN SHE TUREND 17, AND FROM THERE TO HER LIVER. SHE WANTS TO GO TO COLLEGE BUT EVERYTIME SHE STARTS SHE HAS TO DROP OUT BECAUSE OF CHEMO. NO YOUNG PERSON SHOULD GO THROUGH WHAT SHE DOES. AND I AM SO SICK OF CANCER SUVIVOR, BECAUSE THERE IS NO SUCH THING. YOU MAY BE WELL FOR A WHILE, THEN PRAISE GOD.

Sent by MAVIS ADAMS | 11:04 AM ET | 05-16-2007

Thanks, Leroy, for addressing the post made by Anonymous. I saw that post too, and was deeply saddened by her situation; however, I'm just a lurker (a friend of a cancer patient) and a bit of a cranky feminist - I just didn't think I could have responded in a helpful fashion. I hope Anonymous does indeed use the community to find some of the support she needs.

Sent by Jane | 11:07 AM ET | 05-16-2007

Dear Leroy,
Thank You for this blog. Thank You for asking how I am doing. I am truly scared today and I haven't told anyone, not even my husband who has been my "rock of strength" through these three years of brain cancer. The tumor seems to be gone, even though I know those micro cells may still be waiting to pounce. For the past two weeks the lymph nodes in my neck have grown and my oncologist, who I trust implicitly, has a "wait and see" attitude. My mind goes through so many extreme reasons for these swollen nodes. As usual, I have immersed myself in books and the internet, obtaining information overload and worry.
There are times that I don't want to share. I think this is because I don't want to sadden the people that love me.Sometimes I believe if I act strong then i will BE strong. and strength means not showing my worry sometimes.
with that said...You are absolutely right when you said that we have a right and an obligation to talk about this illness. My heart also goes out to anonymous. She should not wait for her husband to ask about her scan and her plans. If he has been supportive in the past maybe he is waiting for you to talk first and he doesn't want to bring it up. Or maybe he assumes everything is okay and you aren't worried because you aren't talking. If neither of these is the case then 'anonymous" should find someone to talk to, including this blog.
This is only my second post and i am finding it very cathartic. Thank You.

Sent by nancy lavelle | 11:10 AM ET | 05-16-2007

I'm so sorry your husband canNOT participate. I'm caregiver & Mother for my son who has done magnificently from a physical standpoint, but not from an emotional pov w/his throat cancer. He's been miserable to me (a caregiver's burden).

How about searching for a support group?
Do you have a Gilda's Club in your area?
What about area resources?

Our family has had multiple tragedies at
young ages in past 9 years & it takes its
toll. LOVE is EVERYTHING, but some people can't seem to learn that lesson.
I suspect your husband (most men aren't like LeRoy where they feel they can talk)
is in lots of pain & can't express.

I keep thinking we are all like those teenagers who think they are NOT going to be the person in that crash. As adults we all know this can happen quickly, but really can't totally fathom this.

Keep searching for an outlet which you richly deserve.

Joan P

Sent by Joan P | 11:16 AM ET | 05-16-2007

I read this everyday and I haven't felt a need to write for a while, but this lady's comments made me so sad. My mother has lung cancer and my best friend died of pancreatic cancer. I don't have cancer but this blog has helped me and I will hope it helps her. My brother , sister, and I are pretty sure my mom has begun to keep some of her condition between her and my father. We worry but she was never one to speak of her feelings with us so she should be allowed to have cancer her way. She's sick today probably on her way to the emergency room at M D Anderson . I wish I was there but I'll wait until she wants me to come. She's always had my love and respect and I won't let cancer change that for either of us. Enjoy Hawaii. For a man on vacation you still seem to be working. Thanks again for this outlet.

Sent by Dianna Austin | 11:32 AM ET | 05-16-2007

Hi, my name is Jacquelyn and I live in Georgia. I had brest cancer with mets, was diagnosed in January 1999. My youngest son was 7 months old. A series of surguries, chemo, radiation, and I am still here, and grateful every mintue of everyday. My husband was so wonderful during that time, never left my side, then when it was all over, he feel in love with someone else. Our son was two weeks away from starting first grade when he left. It has been a terrible trying time for me, and now relationships are difficult, not only because of trust issues I now have, but, body image issues as well, beause of the cancer. It scares me that I might get sick and there wont be anyone to help me. You know you are alone in the world when you go to a Dr.'s office and when you are filling out the paper work and they ask for an emergency number to contact if something happens to you and you have no one to put there.......but, I try not to dwell on those type things, I am trying to make the best life I can for my little boy. Maybe because of the fear that I might get sick again, I try extra hard to spend as much time with him as I can, play as hard as I can, work as hard as I can, live as much as I can! Cancer changes your life forever, not only yours but your family's as well. Nothing stays the same. When you can laugh more than you cry, well, then your living! What a blessing!

Sent by Jacquelyn Hefner | 11:42 AM ET | 05-16-2007

Leroy, as usual, you have defined the reason that I keep coming back to this blog over and over again. Even thought we have never met, and probably never will, I feel like you and the rest of the participants here are my family. I can find comfort, solice, and share a laugh here with folks who really KNOW where I'm at.
Has anyone ever asked for the email address for one of the respondents to this blog? There are a number of these people that I'd really like to write to, one on one. Please let me know.

Sent by Lesa Shipman | 11:47 AM ET | 05-16-2007

I am sorry to hear anonymous's story. My wife is a very important person in my trek. She has been with me at the majority of my appointments. She has her own health issues plus she is a teacher. She has put her health issues on temporary hold until mine are taken care of. It is like she has somehow contracted the cancer herself. For that I appreciate and love her very much. This disease affects every one in the family so it should become a family affair.
Take care

Sent by Clark Hubbard | 11:54 AM ET | 05-16-2007

Dearest Anonimous, just know thjat a lot of people are open to hear your concerns and ready to help. The best thing I did was find a local support group where I feel free and confortable to express all my concerns and worries and get great advice. Hang in there..Love Sofia

Sent by Sofia | 12:12 PM ET | 05-16-2007

Leroy, We all can relate to what anonymous is saying. Certainly, my wife, wants to know everything, down to the smallest detail. I feel badly, some days, telling her how poor I feel. I don't want to burden her more, but I need to talk with her, for the comfort it provides. That makes me feel weak sometimes, I should be able to handle this, but this is like nothing else we have ever gone through. Uncharted territory, where you learn as you go. It all gets very scary. That makes me feel weak also. I just want to be better. Stan

Sent by Stan Wozniak | 12:13 PM ET | 05-16-2007

EVERYONE IS DIFFERENT
It is great, but it is bad when you do not work as a team. In my war to survive, I had a wonderful wife who accepted the challenge and we went forward on a crusade against this MONSTER. But not all people can accept a bomb thrown at their feet. It takes time for some, so you wait and help them with their fears and anger. Use all the resources available to you.
One of my WORST hospital visits, did not involve ME as a patient. I had been in remission for quite a few years and my original doctor was in the hospital. When I had a check up by his son, the original doctors staff asked me to go see Dr. Fuchs. I thought about all the times he stood at my bed saving my life (Hodgkins,2 heart attacks.), and I accepted the fact I had to repay his visits. It is really tough standing by the bed trying to be positive, listening with Empathy, and knowing this would be last time I would see him. So it always helps to walk in the other persons shoes for a while before judging them. Think what it is like for all the people that take care of all your treatments!!!

Sent by Sam Means | 12:50 PM ET | 05-16-2007

Anonymous,

It is very hard not to be on the same page when one of you has cancer. Please DO use this blog for support. If you'd like to chat with just one person, my email is didedoodah@aol.com. I'd be glad to correspond with you.

Sent by Diana Kitch | 12:52 PM ET | 05-16-2007

Stated by Carl Wilton in a post of May 16. I can relate to that so well, and if you must know, that mental image made me laugh harder than I have in weeks...
To Leroy and spouse and everyone---wow the volume and depth of recent posts has been amazing. The blog posts have taken on a new life since the airing of "Living w. Cancer". This blog/posts is a real gem, I can't imagine life without it now. Have been reading since I started chemo in June 2006. My heart is with you folks too, i laugh, i cry, i have hope too from your stories, so many wonderful people with C in common. Keep reading, keep writing! from Sherri in Texas

Sent by Sherri Eggleston | 1:13 PM ET | 05-16-2007

Anonymous,

I also know what you are feeling. Most of my friends still treat me as "I am my disease" and not "I am someone who happens to have a disease" as Leroy said. I however have one friend who simply cannot accept that I have cancer and worse, he shuts off the topic completely despite all my efforts; he won't open up and let me know what he is really thinking and feeling. It is almost as if he is in complete denial. I will keep trying to talk with him because I want him to have the chance to say goodbye should the worst happen. I also keep in contact with this blog; it gives me an outlet for my thoughts and feelings. It also provides strength and inspiration that I am not alone. Please know that as long as this blog is here, you are not alone either.

Sent by Randal Gray | 1:25 PM ET | 05-16-2007

Amen.

I can't imagine having to make this journey alone. Most of the people I work with (who I do care deeply about) don't like it when I talk to them about my illness. They are squeemish. Maybe they are afraid they will say "the wrong thing". They are not comfortable for whatever the reason. Outside of one co-worker who recently lost her mother to lung cancer, none of my friends at work have been through the journey. Maybe if they ignore it, it will just go away???

I too didn't know anything about this blog until I saw the Living with Cancer show a few weeks back. Now I come here every day. I have found a community of people who understands me. My life does not revolve around cancer, but it is something I feel I need to be able to talk about from time to time. It seems like almost everyone who contributes here understands. They understand the fear, the loneliness, the pain, the sadness. But, we also understand the importance of trying to find and enjoy the positives, too. We are not afraid of our feelings. My eyes "sweat" almost everyday when I read these postings. I just sit here and nod my head thinking, "Yes, I understand exactly".

I continue to be blessed. July will be 2 years clean. But, I am not naive. I know that that son of a b*&ch cancer is just hiding and biding his time. But, I live from one MRI to the next and enjoy my life. I hate Mr. Cancer and I am proud that I beat him back. I pray that I don't have to fight him again, but I will not let him run my life. I run my life. I am in charge of it. Not you!!!

So many people did so many nice things for me that I owe it to pay back; even if paying back is only contributing my thoughts on this blog. Being able to contribute here makes me feel like I am having a positive impact.

Anonymous, you are not alone. Hopefully your spouse will get over their fear and give you the support you need and deserve. But one thing I do know, this community of people you find here will help you and support you because we understand you.

Sent by Dave U. | 1:33 PM ET | 05-16-2007

Well, some of my post got cut off. Re: Carl Wilton, he stated since cancer was a part of himself, how exactly was he spose to keep "fighting"?? by punching himself in the nose??

Sent by Sherri Eggleston | 1:35 PM ET | 05-16-2007

Leroy,
Hi! My name is Robert. I have lung cancer. This after having successfully had my prostate seeded several years ago for that cancer. I to some extent blame my GP for not following up, on an annual basis, with at least a chest x-ray at the time of my annual physical.
I've undergone 1 cycle of chemo. Decided that would kill me if an opportunistic infection didn???t. Tried Tarceva, did not like the side effects and so stopped that. Adjusted my diet to eliminate, as much as one can, sugar and white starches.
I'm trying to live my life as normal as possible until I no longer can. I feel the advance of the cancer but am going to Ireland and Germany next month with my son. If I can accomplish that I will be happy. The rest, La vie.
Thanks for lstening.
Robert Oehl

Sent by Robert G Oehl | 1:42 PM ET | 05-16-2007

Anonymous

Since your husband can't bring himself to talk with you, please think about getting into counseling with him. Families often have a tough time dealing with disease when they are in different places emotionally. Counseling could help a lot.

Sent by Diana Kitch | 1:56 PM ET | 05-16-2007

I remember almost 4 years ago sitting in a small doctors office with my Mom and Dad. The doctor came in and told us that he had terminal cancer. For about a year after this news my brain went into panic mode.....literally. During this time, my Dad was taken to the University of Chicago to go in and possibly remove the liver/pancreas tumors. The surgeon came out too soon. We knew it was not good news. As they opened him they found that the cancer had spread to many more organs than just the liver and pancreas. He was not even 50 years old at this time.

My brother had brain cancer when he was about 21 years old. He underwent surgery and radiation, but we knew he would be okay. A couple months after this my Aunt (my Dad's sister) passed away from breast cancer.

Our family has had it's fair share of cancer which makes me nervous as to my fate. Will I get cancer too?

My Dad is miraculously still with us and I was just able to see him on Mother's Day and he lives about 1 1/2 hours away so I don't see him too often. He has been through so many different chemos. He is thin. One day he is "not bad." The rest he spends nauseous and just plain sick. He spends most of his time at home on the couch with the dogs watching Oprah or Doctor Phil! I give him a hard time for that.

It is difficult around Christmas or birthdays or Fathers Day when going to buy a gift. What do you buy someone who truly is dying? This is something I struggle with. I wish there was a place that sold activities, toys, games - for the sick. For those who are too sick to go golf, or go to a movie, or enjoy life outdoors. Just creative ideas to keep those who are ill entertained or keep their mind going. Just a thought.

With Father's Day coming up I struggle to come up with something for my Dad. Last August I married a wonderful man and my Dad was able to be there to walk me down the isle and to dance with me. It was quite emotional. The following month my brother married, but my Dad was too ill to attend the dinner although he made the ceremony. This I consider a gift. Although I always said I wouldn't- I hope this Father's Day to be able to give my Dad a very special gift. My husband and I decided to try to have a baby and pray that my Dad will be able to be around when the baby is born. I am thinking this would beat a typical Father's Day gift by a long shot.

In regards to being able to talk about cancer and what you and your family is experiencing throught this, as you can tell I think talking is therapeutic. My brother does not speak about my Dad's illness because it is very difficult for him. My Mom more pushes him to go to chemo or to check out new therapies. I like to share my thoughts with my Dad. Be understanding when he does not feel up to going to chemo. Learn about his illness. And agree with him that chances are this is gonna get him, but as minute as it may be - keep faith that he may hold on just a little longer (for my sake), find something to make him feel better during these final times or just that our family can come together and show as much love as possible to my Dad before he goes.

If anyone has any similar experiences with liver/pancreatic cancer or just losing a parent. I would be greatful to hear your story. Either in this blog or you can send it to my e-mail
Apes0621@hotmail.com

Sent by April | 2:11 PM ET | 05-16-2007

Today is LIVESTRONG DAY! Unity IS Power. Family is power and strength! The HUMAN family. We as a family must shine light on these diseases. The key word for me right now is DESERVING. Anonimous-I hope and pray you realise how deserving you are-connecting to others is important right now. I am so grateful to my support system! Leroy- you are so compasionate!
Linda

Sent by Linda Mowbray | 2:31 PM ET | 05-16-2007

My heart goes out to you Bruce. When my 18 month old son was going thru chemo, I was always so afraid of going to that "dark place of what if".....I remembered after the Columbine shooting, one of the victim's mother said she had the daughter's room closed and she couldn't bear to go in for months.

Hang in there Bruce (and Anonymous). You know there are always people here in this blog to listen to you.

Sent by grace | 2:40 PM ET | 05-16-2007

I'm a stage IV breast cancer patient with metastasis to both of my lungs. I've been living in Baton Rouge for the last 30 years and have no family here whatsoever (my son moved from New Orleans to Chicago after Katrina), so I've been a very independent sort of person especially after my marriage ended thirteen years ago. When I found out I had cancer a year ago I was truly shocked, saddened, and wondered how I was going to manage "everything" that goes along with a cancer diagnosis. I soon learned that I was not alone and that my friends, co-workers, colleagues, and family in Texas were not about to let me bear this burden alone. I cannot tell you how happy these people have made me and the support, care, and love they have shown me as I "fight" this horrible disease has been truly remarkable. I cannot help but cry when I think of the many ways these wonderful people have shown their love and support. I also want to point out that if one has faith, then one is never truly alone, because HE is always with us. Of course, your column has also been a big support to me in many ways. I hope "anonymous" will read your column and realize she is not alone, but part of a very large community. AND I prefer to use the word "fight" because in my mind I am fighting a war. although sometimes I lose a battle, the war isn't over! Enjoy the rest of your vacation!

Sent by Terry deBen | 2:44 PM ET | 05-16-2007

I'm married to a nearly 57 year old guy with cancer, and he has never been one to "enjoy" discussions about feelings, issues, etc. So, if I may, I would say to anonymous: Much as you want him to ask you about it, maybe instead you need to tell him about it. Maybe in a letter, or an e-mail. I'm not saying it's right, and I'm sure not saying you don't deserve to have him ask. I'd guess that his reaction to your cancer is a lot like reactions to past, emotion-laden problems. We as women often want them to offer, to understand, to engage -- especially when the issue is something truly scarey. But, if he hasn't done it yet, and it's been largely a good relationship, bite the bullet and reach out. I find my traditional guy responds best to letters or e-mail, so he can take it in in his own time. I almost always get a good response when I do so. If he's at bottom a good guy, even if he is scared witless for you, this may do the trick and open the door.

Sasha, I have done a lot of that kind of cleaning. My husband has cancer again, and when first re-diagnosed and he started losing weight, I threw many large sized clothes out etc. Cried a lot while doing it, mourning for the days when my husband was stronger/bigger than me, when he didn't look sick and weak. I, too, did it furtively, afraid that he'd think I thought he was about to die. I think for those of us who are tidy and like orderly, sorting the stuff out is just a way to exert some control over SOMETHING, ANYTHING in this new world. In better, cheerier moments (because we have this kind of relationship) I tease my husband that he can't die because I'll throw out all his accumulated crap. Or invite the ex-wife-who-left-him to his funeral. Does give him pause!

Sent by Teri | 2:46 PM ET | 05-16-2007

Hi Leroy, thank your for raising this important topic. I feel for the person whose husband has not asked about her CT scan. I would like to suggest she begin the dialogue. I know that it is hard. But often my husband will focus on other things and not talk about the cancer as a way of coping. It is not a measure of how much he cares, it is his way of coping with this awful everyday reality that we both have to face. He came with me to all my appts. and was there for everything, but we often didn't talk about it, we just did it together. I now am using this blog as a way to begin dialogue and so is he, it has been a god send. Some days I don't want to talk about it. I get so weary of saying how I feel, etc. The other thing is that my husband (maybe like a lot of men) is a problem solver, and this is one problem he can't solve, so he has put his energies into making my environment comfortable and reducing my stress as much as possible. I really appreciate it most of the time, but sometimes I just want to be normal and have to deal with everyday stuff. So its a fine line. I am confident in my husband's support and love, but that didn't come without talking about it, we also talked about the different ways we each need to cope. I hope that the she (anonomyous) can get to that point. Maybe you can use our comments to help get the conversation started.
Leroy, take the greatest care and thanks again for this blog, it is truly another major lifeline for me, Best, Estelle

Sent by Estelle | 3:01 PM ET | 05-16-2007

When my father in law was diagnosed with lung cancer, the only comment my mother in law made was,"Well, he's lived a good long life." (He was a tennis playing, sailing , windsurfing active 72.) She became very controlling and angry. Nothing was ever spoken about cancer or-fear, sadness, plans, money, life, death or treatment. She stayed a distance from him from that day on. He cooperated and died quietly. She came home after the funeral and said- "take that oxygen out of the house- I need a smoke". I was the only person who saw her cry-once.
Two years later she was diagnosed with lung cancer. She angrily went about her life, controlling everything that touched her- mostly her childrens lives-since she was not in control of her own.
Some people can not bear the words to be spoken. It was not that she didn't love her husband or family- she felt stronger (more in control) when she responded with anger instead of communicating her needs and fears. (That might show a lack of control) The words were never spoken. Not allowed to be! Not everyone has the ability or the desire to speak about their fears or pain, or hear about yours. It's very sad-but true. It doesn't mean that there isn't love-- pride and fear over shadow it for some.

Sent by Debbie | 3:44 PM ET | 05-16-2007

Apology/Confession: (from Vicky) I feel like I've been cowardly and deceitful by posting "anonymously" but I also felt embarrassed to admit the truth and I think I was also trying to protect my husband at the same time I was complaining about him.

Leroy - It was very unnerving to see my anonymous post in your blog this morning but it was also very comforting and validating. Thank you all for your words of concern and support. I am a very private person and it's very difficult for me to share such personal things but the longer I'm in this cancer world, the more I'm finding I need to talk - it mentally wears on you.

Dona I know exactly what you mean about needing that time to process things on your own before telling others.

My original diagnoses of breast cancer was in Sept 2000 and as I shared in an earlier post , I chose not to accept any chemo - I had the lumpectomy and then I went an alternative route with carrot and green juices and herbal supplements. The chemo Dr told me I'd be back in 6 months with mets to the ribs and close to death if I didn't take the chemo but the life expectancy with the drugs was very bleak as well. I just decided if I was going to die then (at 47) I'd rather not die bald and puking my guts out. In talking with some of the women in the local BC support group and with many people really, I found that people felt anger and even hostility towards me and my choices. That was very difficult. I wasn't trying to push my choice of treatment on them but I felt like they were insulted because I wasn't doing the traditional treatments. But I felt stronger and very motivated then and didn't sense the same need of support that I've been noticing now almost 7 years later.

I stayed with the healthy diet for a couple of years but got to the point, it was hard getting down all that juice etc and I drifted back into normal eating again and then in 2005, after about a year of receiving cortisone shots for "bursitis" on my right shoulder and not getting any relief, a MRI and a biopsy revealed cancer in my right clavicle. The collar bone was actually breaking from the cancer and then trying to reheal etc before I got radiation. That helped with the pain but still have a gap in my clavicle and of course the radiation weakens the surrounding bones. 2006, more mets - this time to the left shoulder joint - very small spot and more radiation - more weakness, so today it's difficult doing much with my arms as far as heavy cleaning, lifting and can't drive for more than 1/2 hour without tiring.
And now a recent CT scan shows mets to lymph nodes in chest/lung area (was treated for pneumonia for a weeks before they discovered this.).
I'm just plain tired - I'm beating myself up thinking "what if" I'd stayed with the natural methods and thinking how weak and undisciplined I was with all of that. But the good news is my radiation oncologist told me this appears to be a slow growing cancer but this is very untypical from what they usually see with my diagnosis. He encouraged me with "you've been beating the odds with this right from the beginning" and indicated that I'm a "fighter."
Part of me wants to keep fighting and yet there is that part that is tired.

I want to talk to my husband and pick out our cemetery plots, our double headstone and I want some input to my funeral. Maybe I've got control issues (?) but then maybe that control has helped me survive this long after being told I wouldn't make it past 6 months?

My biggest concern is leaving my young grandchildren - 5 and 3 1/2. My 5 year old grandson and I have been very close since his birth as I took care of him every day and I still have him 4 times a week. That's how I spend my time/energy.

Jane - thank you for making me smile with the words that maybe what my husband needs is a swift kick in the pants.

Ruth, my husband knows why I was going for the test - I feel it's on him to ask me - and there was also the issue that it would have been nice for him to have driven me to the hospital that day. He knows I've been physically exhausted but I wouldn't ask and he didn't volunteer. Originally I was doctoring at Roswell Cancer Institute and he did drive me for my appts as I don't do city driving well at all but then when I decided to doctor locally I felt perfectly capable of taking myself and I did and didn't mind for the most part. Out of 36 radiation treatments plus all the other tests, appts etc, I asked him one time to take me and that was near the end of the radiation - that can wear you down too.

Mavis, my heartfelt sorrow and sympathy is with you in your situation. I would much rather be dealing with cancer myself than to have one of my children or grandchildren going through it. Love, thoughts and prayers to you and yours.

So many of you wrote so many encouraging words and I'd like to thank all of you and comment on many things that were said, but don't dare write anymore than I have already. Sorry for being so wordy.

Sent by Vicky | 3:45 PM ET | 05-16-2007

Leroy, in your wildest of dreams did you ever envision such a blog, such a place of empathy, sympathy, support and safety to express one's inner most feelings perhaps never said out loud before by so many people!! In your own journey with cancer, you have created a wonderful place for us all to be linked together.

In the melanoma cancer world there is a site created by a husband and wife in honor of her sister who died from melanoma. It, too, is a place such as this one that you've created but is focused exclusively on melanoma. On this melanoma site, other cancer patients or caregivers will often post to ask if there is a site for their type of cancer and sadly most often, there is not. You have done, perhaps by accident but I prefer to think of it as divine guidance, what doesn't exist in the cancer world, an all inclusive, universal site for support. You are our "teacher". You pose the questions or express your personal feelings and your blog comes to life!!!

I truly hope and pray that you don't now or will ever feel that this is a burden. I hope that it is now more of a "calling". You have done a wonderful thing.....

Hope the vacation is going well. We are all there in spirit.

Sent by Al Cato | 3:49 PM ET | 05-16-2007

Leroy and Anonymous,

Yes, your post broke my heart, too. I'm always amazed at how much cancer changes our perceptions and those of folks around us. Perhaps your husband has simply been changed, and, for a time, cannot process a future....no, a present, living with cancer. I'm glad you are there to help him with his burdens.

I recognize that what my wife sometimes processes (and what I perceive) as anger and frustration with me is, instead, anger at my disease. As the disease progresses and I'm able to do fewer things, she is robbed of that future we promised each other nearly forty years ago. Long walks on the beach become harder. We promised in sickness and in health. We promised til death do us part. Those are sacraments. Sometimes we keep sacraments in peculiar ways. Sacraments are always mutual.

A few weeks ago, I returned to bed after a middle of the night bathroom trip. Sleepily, she said, " Are you OK?" I, "Yes, I'm fine." In our dimly lit bedroom, as sleep once again came, I was aware of her, very silent, looking at me and listening. It's a caregiver thing I thought, drifting off. Next morning, I asked her about it.

"Yes", she said, "I often just listen to you breathing in the night. I know that you will not always be here and I never want to forget what that sounds like."

See, that's a sacrament.

Michael Lewis
Seattle

Sent by Michael Lewis | 3:51 PM ET | 05-16-2007

I now exactly how Anonymous feels! 20 months ago I was diagnosed with a rare and aggressive cancer. I was given 9 - 12 months. I was 44, married for 20 years and we had 3 kids under the age of 10. Obviously I've outlived that prognosis but a cure is not possible and my markers are sky-rocketting.

I know that my husband is scared silly about being the sole parent of our kids and that is responsible for much of what has happened over the past year and a half. Until recently he refused to discuss my condition, plans for the future and even belittled my condition. I may look (except for the baldness) and function more or less normally but I am not OK!!! The other day we went to the cancer center to pick up the contrast so I could prep at home for my latest CT. I have CTs every 5-6 weeks and this man didn't even know where radiology was located. He had never come with me in 20 months!

Also this past December (quite likely my last Christmas) he chose to pursue outside "friendships" which led to him confessing to being closeted. Talk about betrayal! Not only am I dying but I've spent my life in a lie with a stranger!. Another burden for my 3 soon-to-be motherless kids! The good news is that this sure took my mind off of terminal illness.

Luckily I have a wonderful support network and some amazing friends. Therapist after therapist has told us that my husband's behavior is actually a "more common than you think" stress response. But still!

It is very painful to read comments where wonderful supportive spouses are lauded. Recently my husband and I are finding our way back. I've been able to forgive him. We've even been able to discuss future plans for him, the kids etc. I'm glad he's growing up and accepting his responsibilities but it has come at a great price and been more pain than I need or want.

Thank you for this wonderful blog which I have been reading from the beginning! I've asked him to look at it so he knows what I'm thinking and feeling but I don't think he has.

Sent by Holly | 4:01 PM ET | 05-16-2007

How am I doing? Trying not to cry... again... It is times like this, when I hear things like this, that I feel that this is really unfair. But I know from personal experience we all deal with things our own way, and while it is not always healthy that is just the way it is...

Sent by Brit | 4:17 PM ET | 05-16-2007

dearest anonymous,
my heart truly aches for you during this difficult time.i find great solace in writing my thoughts and feelings down , even if no one ever sees them. there is a terrific place on the internet called caringbridge.org you can open up an account for free and keep a journal ! i love mine. you can visit it anytime if you would like visit/marianne.
i am one of the lucky spouses , being married to a wonderfully supportive husband. BUT there are times when i go to the doctor alone and i hear things that even i do not want to share with him. this is a difficult journey for all of us. my suggestion to you is to do WHATEVER it takes for you to feel some sort of comfort.meanwhile, while you are deciding know that we here on this blog are thinking of you always and we are here for you and each other ,thanks to that big guy, leroy!

Sent by marianne dalton | 5:34 PM ET | 05-16-2007

Dear Anonymous: My husband told me I was suicidal when first diagnosed with breast cancer because all I would do was have a lumpectomy. The next year cancer returned and I had a total mastectomy with reconstruction followed by chemo. He was very supportive during all of that and went with me to every appointment. He now believes that I am "all better" although I know deep down in his heart lives a terrible fear. He doesn't talk about it to me or anyone else. We are your family and are here for you, all you have to do is reach out and you will be loved and understood. My prayers are with you and your husband. Thank you Leroy again for bringing up an issue that affects all of us and for your love that radiates in your words.

Sent by Vicki | 6:41 PM ET | 05-16-2007

I have responses to several people here.

Teri and Sasha: I did the same thing. It's actually a funny memory in a sick way. Terry knew the time was short (we were told "within two weeks," and it turned out to be five and a half). A friend of mine came over and we went upstairs and bagged up all of Terry's clothes and gave them away. This was roughly week 2 of the five and a half.

When Terry was still alive at week 3, I said "You HAVE to die. I've already given your clothes away."

I do wish I'd done more clearing out. This is an enormous house with 20 years of stuff crammed into it. Don't be ashamed of trying to make it easier on yourself. It's just "stuff," after all, and can be replaced if necessary.

April: Perhaps you seeing your dad and spending the day or weekend with him would be the finest gift he could get. I think we all have a new appreciation of the gift of time.

Grace: Thank you so much. I tell people, when they ask, that I have good days, and then I have the majority of the other days. I'm pretty blunt, so when someone says "How are YOU?" I tell them. Then they regret asking.

Anonymous: Don't be afraid to spill your guts here. We have an incredible janitor :-) Talking always helps. Even if it's on-line and we're thousands of miles apart.

Leroy: Thanks so much for bringing up what seems such a simple question. It really touched a nerve today...apparently with several of us.

Sent by Bruce | 6:49 PM ET | 05-16-2007

I couldn't agree with you more Leroy. There is freedom in being able to talk this through. My boss knows that I will do what I have to do, but also knows that every once in a while all I can say is "I HATE THIS CRAP". I cannot imagine the stress I would feel if I didn't have some kind of release. My husband tries to keep me in the positives, but also knows that I can't be happy all the time. I admit that I am scared, but I am not willing to stop this fight. I am only 9 months out of chemo for NHL and still doing maintenance and he understands when I need to talk about this. He didn't want to watch the documentary, but wouldn't take his eyes off the TV and has brought up discussion about it since...Thank you

Sent by Beth | 7:25 PM ET | 05-16-2007

Leroy, This is my biggest struggle so far. I have known since Februrary that I am doomed and I can't bring myself to tell people. I have told less than 10 people and I minimize it to them. My attempts at chemo are not working, tumor markers are rising and I'm starting to feel lousy. Maybe this is part of denial but I justify it by telling myself that I don't want to trouble others. This weekend I will be at a cancer confrence and maybe meeting someone else with a similiar prognosis will help.

Sent by Jill | 7:45 PM ET | 05-16-2007

Its funny the way that cancer is seen differently by those that live it and those that endure it. I can recall feeling hung out to dry as countless doctors came in an explained everything to me, but then left my wife and I without really telling us the grave truth: I was in bad shape. People would come in to my room see me, speak for a few moments, and then leave. Often they would breakdown outside my room, some not beyond the limits of my fuzzy hearing. They saw a different person and held that as being the last state that they may ever see me in. There is so much attached to the emotional state of those that endure, I felt they too needed a outlet, a shoulder, a blog.

Sent by Ehren Heyer | 8:51 PM ET | 05-16-2007

My heart goes out to Ms. Adams. In a perfect world, no one would have to contemplate outliving a child, much less a grand child. Of course she is mad.

There is such a thing as a survivor, Ms. Adams. In fact, I think you can beat cancer and die from it. The trick is to keep it from stealing our joy, our self esteem, our inner peace. The doctors control the treatment, but only we can control what happens between our ears.

I had Hodgkin's Disease at 29. It was at an early stage, and my doctors bought me 23 years. I learned a lot of lessons from this experience, not the least was that the state of my mind had a huge influence on the course of the side effects from the treatment.

Now I am trying to keep my joy, self esteem and inner peace while going through treatment for breast cancer with mets to the bone. The tumor developed in an area I had radiation for the first cancer, and I wonder how much the treatment contributed to the development of the illness. But I did get those 23 sweet years. I know this disease will eventually kill me, if I don't get hit by a truck first. But I have a 10 year old child, and the longer I survive, the more I can contribute to him. I have some other goals too, ones I can accomplish. Best of all, because I can concentrate on these goals, my side effects are minimal right now. It helps that I am on a good anti-depressant. But having something to look forward to makes the biggest difference.

Love up that girl, Ms. Adams. Enjoy your time. Bring home some chocolate. Find some things you folks can do together which help others and are pleasing to you both. If you feel like nesting, clean the clutter behind your loved ones backs. Don't let cancer take the bliss from your life and leave you bitter.

Sent by Susan | 11:07 PM ET | 05-16-2007

Sasha,
The "clean house" technique, I think, is widely used. When I was first diagnosed last year, I was in a hospital bed for two weeks and really unable to attempt anything so daunting. However, a month ago I found out my cancer came back and I completely freaked out. I consolidated my finances and started throwing things out. I don't think its "rushing his death" but I think that when faced with a potential disaster, unable to personally prevent it, we try to find ways to soften the blow. You think to yourself that throwing some of his old things out will save you from having to do it after he is gone, when it would undoubtedly be more difficult. For me, that was an attempt to save my parents and sisters the anguish. That said, its important you don't give up hope. I'm now learning that the abnormalities in my body may not be a recurrence. I'm hoping I can look back at my desperate acts and shrug them off as unnecessary...

Sent by Bobby Silberman from CT | 11:42 PM ET | 05-16-2007

Dear Leroy,

Thank you for openly and thoughtfully participating in the Living with Cancer special with Ted Koppel. I have Head and Neck Cancer and am being treated for my 3rd recurrence over the past two years. It has been tough, but it has also brought me some rewards in my relationships with others. Beginning the day after your special, I began my own cancer blog. The URL is...

http://hncancer.blogspot.com/

It provides the background of my initial diagnosis 2+ years ago, my current disabilities, and moves through to today's chemo treatment. One blog entry focuses on you and the Ted Koppel Cancer special and highlight's my take a ways from that program.

I hope you find this interesting reading and in some way can even benefit from my lessons' learned. I'm a bit jealous of how well you're doing given my circumstances, but far more pleased with how well you are doing. I hope for your continued success and good health.

Warmest Regards,
Ed Steger

Sent by Ed Steger | 11:45 PM ET | 05-16-2007

My husband and I decided it was time to stop chemo treatments. They aren't working. That decision was made just two weeks ago. We are in denial. We know what this decison means and yet we secretly hope that a cure is around the corner. Maybe he can hold on just one more month, one more day, one more... We don't know how to do this. We haven't done it before. How do we prepare. Oh, we have done the will, moved to a smaller house and those kind of things. How do you go about and live each day knowing that he is going to die soon. The fear is growing. The fear of being alone and lonely (I keep reading and hearing about this horrible lonliness). The fear of his final days being painful for him.
We have decided to contact hospice even though we probably have a few months before we may be at the end of his life. We just want that support. One more person on the team can't hurt.

Sent by Val Martinson | 1:24 AM ET | 05-17-2007

The cancer documentary was huge for me, and I see all the thank you notes here which are just a glimpse of the lives you touched. I am hoping you can tell me if it will air again or can I buy a copy. When I went to my therapist this week, it was the first visit I had with her that I didn't cry. When I first brought up the show, she immediately thought the worst. I explained some of the things that I found so helpful. Mostly things that helped me to understand what I think and feel is not a crazy gauge, but rather common. By the end of our session she thought it would be something to put in the cancer center library to help others. I live in a town of about 160,000, but the support groups here aren't real strong. My perception may be a bit slanted because I lived in Dallas for the first 10 months after my diagnosis and Dallas has a Gilda's Club. The biggest blessing at Gilda's is the entire family treatment. My youngest daughter is 10 and genuinely understands this disease as much as any of us do. I honestly think you deserve more than a vacation. I have had 8 surgeries and the last one took me down for a month. I have almost no recall of that month. But what it did was force me to stop moving, which was something I believed I absolutely couldn't do. I guess I thought I was going to out run it, or keep "in shape", it was the exact WRONG thing to do. I feel better now than I have in the two and a half years I have been fighting. I can't believe I was hurting myself and moreover can't believe my oncologist never told me to just STOP. I went to rehab three times a week, and I will do that again. I just won't do it until my last
(hopefully) surgery and recovery are complete. So pushing yourself is not very smart. I wish I would have figured that out after my mastectomy, instead I cleaned my baseboards with a toothbrush and tucked my drains in my pockets!
I hope there is a place to buy a copy of the show. It was so powerful and real, and I thank you for taking the time to think of strangers! ALOHA

Sent by Annette | 2:36 AM ET | 05-17-2007

Bruce,
BRUCE - My heart aches for you. You miss Terry and you're lonely, but you're not alone. What you're facing is painfully hard and I simply can't imagine it. But I guess I just want to say that I'm here, I care... we're all here for you.

Sent by Marylee | 7:53 AM ET | 05-17-2007

I'm a therapist and a feminist who has compassion for silent men. The eloquent men who contribute to this blog are, sadly, exceptions. Our culture still prescribes "toughness" for men, even though athletes on TV now routinely shed tears. Toughness does not include expressing feelings through words. Nor does it help men be engaged listeners, when the topic is about unspeakable loss. Many men appreciate getting the opportunity to learn how to name their feelings, how to share them, and what to say when there is nothing "useful" that can be said. A colleague of mine once said "With women, you can do therapy. With men, you do education." Please forgive the oversimplification. Many have already offered sympathetic thoughts about why the husband of Anonymous remains silent. And I know that it isn't fair to ask Anonymous to continue to support her husband while she tries to deal with cancer. But this man needs help! He may simply lack the skills that he needs to talk about this. He may not know how to stay present and listen to things that are painful. The right counselor can help. Anonymous could ask her husband to accompany her on one of her many appointments, and this one can just happen to be an appointment with a savvy and compassionate professional.

In addition to words, an author whose name I forget says that there are other languages of love: touch, service, gifts, quality time. I hope that Anonymous's husband speaks at least one of those love languages, even if conversation about cancer seems too impossible or too terrifying for him.

Sent by Wendy Hovey | 8:43 AM ET | 05-17-2007

Such a wide array of emotions I am reading. The cancer that was in me seems to be gone after chemo, bilateral mastectomies and oophorectomy in Nov 05, but it was a very large tumor so we will wait and see. Shortly after my 3rd chemo, my best friend became a raving lunatic and threw me out on my ear. She didn't feel safe. She was angry I wasn't working every day. Her mother had died from cancer, and her relationship with her mother was a bit conflicted. At the time I really didn't care what her reason was as I was devastated by her behavior. Everything has worked out and I am with the most supportive person on the planet right now. I understand what Vicky/anonymous is going through. Men tend to be problem solvers, not talkers. They don't see talking as a solution. So start the dialog very slowly...perhaps by asking a single question. He needs to talk too, although he doesn't know it. Sasha and Bruce, I am sorry...as I am for all of you who are so bravely LIVING with cancer which will ultimately take you. I hope that your days and those of your loved ones afflicted with mets are Good Days, and that the end, when it comes, is a little bump and not a big hurdle. I b***h about my "journey" occasionally at www.xanga.com/butshebites...if you go to the oldest entries you will see.

Sent by Alycia Keating | 10:11 AM ET | 05-17-2007

Val: You can't prepare. Nothing will ever make you ready for it when it happens. But you'll endure, because realistically what are the other options?

This is the toughest thing I've ever been through, and doing memorials all over the world for Terry is incredibly hard but also very rewarding. I never realized how many friends--real friends--we had made and how many fans Terry had "out there."

Make sure, since you have the blessing-in-disguise of knowing the end is coming, that you say everything that needs to be said while there's still time. You won't regret it. I promise.

Marylee: Thank you. You're right, and like I said, there's a subtle difference between "alone" and "lonely." I can be lonely in the middle of a crowd of friends. I grew up in a big family, so "alone" is actually a nice change...but "lonely" is another story entirely. I don't do "lonely" very well, I'm afraid.

My dad died last May, and a few months later my mom said "I cry every day." I couldn't relate. Now I can. They had been together 54 years. I had just 20 with Terry, and it still hurts.

Sent by Bruce | 10:34 AM ET | 05-17-2007

Leroy and all, I think doctors should automatically recommend getting into some kind of support group or into a blog like this one. I think that would have saved me a trip to the "wacky" ward towards the end of my chemo treatments (overdosed trying to get some sleep)....I still feel the need for support and this blog has been very helpful and insightful. It's wonderful just to know you're not alone. Thank you all again.

As for anonymous, her husband is really missing out on an important part of their lives together. I was fortunate enough that my "boyfriend" at the time went to every MRI with me. We had only been dating 6 weeks when I got the news. We've been together 3 1/2 years now - married 1 - and I feel totally loved just to have him go through all the bad stuff with me. He's been to "hell" and back with me at least twice. Now I keep waiting for the other shoe to drop....I can somewhat relate to her in that I don't think my ex-husband would have been so generous with his heart. She has my sympathy and empathy as well. At least she knows she has everyone on this page now.

Sent by Tammy | 12:57 PM ET | 05-17-2007

Dear Vicky,

I was so glad you posted. I read every word. I think many of the hurtful behaviors you have experienced are based on the simple fact that the other person is very scared.

You took an alternative path and you did very well. The folks on main street are going to look at you and start "what if"ing. Folks with cancer tend to try to seek out people who are just like them (same diagnosis, same prognosis, same treatment, etc.) then see how well they do so they can have some assurance. They are simply afraid they are doing the wrong thing.

With cancer, there is no wrong way. You do what seems best to you given the information you have. No one (including you) needs to beat themselves up for what they might have done differently.

I think the same applies toward your husband. In the day to day, his actions might seem insensitive. My guess is he is scared to death.

I like your fighting spirit! I have breast cancer too and I know how it terrifies those around us. I know how weary the fight is.

I know how the sense of privacy flies out the door with this diagnosis but I think that is a good thing. I have gained a lot of valuable information by being open about cancer and I've been able to reassure others around me.

You might look into the bone building medicines they use to treat breast cancer mets to the bone. It might not be for you but I have heard from other folks it can help ease the pain and actually repair the damage the cancer causes.

Please keep posting.

Sent by Karen D. | 1:11 PM ET | 05-17-2007

Wendy, Thanks for your insight. I believe the author you are referring to is Gary Smalley? I've read his various "Love Languages" books.
We've been married for 34 years and although I know he is committed to me, I sense such a separation in our relationship over the past 5-6 years. There are other issues there but the cancer has definitely been a strain. He's never been a communicator and is the most effective person I know on changing the subject. I've tried talking with him so many times in the past and he changes the subject as quickly as he can. As Wendy indicated, he needs help. :-)

Karen, Thank you for your heartfelt message. Appreciate you all so much.

Sent by Vicky (NY) | 1:46 PM ET | 05-17-2007

Dear Leroy,

In you April 24th message you asked "Who are you?" I'm an un-important retired "cancer patient" fighting for my life. However, I turned yellow in June 2006, went through and failed the surgical option at the University of Washington, Seattle and returned home, underwent TomoTherapy radiation treatment and to the extent my body could stand it, chemo. My cancer is a growth below my liver that blocked the bile duct called cholangiocarcinoma, or Bile duct cancer.

Though past MRI scans fail to be able to measure or see the growth, not unlike you we are waiting for the other shoe to drop and have scheduled further scans.

Fortunately, I'm able to start making short strip again. I am currently receiving your regular NPR Blog messages. Keep up the good work!

Sent by Alan Wilhite - Bellingham, WA | 2:55 PM ET | 05-17-2007

I mentioned further up this thread that I'm pretty blunt. Today at lunch my co-workers got a sample of it.

A bunch of us went out to lunch together. During the course of conversation, one of them looked at me and said "You're holding up well."

"No, I'm not," I said. "it's been almost 13 weeks and I'm no better than I was on day one."

"Oh," she said. "Well, you APPEAR to be holding up well."

"That just means I'm a good actor," I said.

Then she changed the subject.

Sent by Bruce | 6:52 PM ET | 05-17-2007

Vicky,
My friend of 25 years tells me I'm feeling sorry for myself when I try to talk about how I feel. He pursued another woman and nearly broke my heart when he blamed me for his failure to "win" her. Then he locked 7 cats in my home for a month. I couldn't get anyone to help me w/throwing away most of my possessions. The smell was overpowering. He unplugged the refrig in the summer no less. When I got home it was filled w/1 million maggots. I cleaned it up myself and ended back in the hospital.
It is difficult to read posts that profess to empathize w/you but then tell us how wonderful his/her own spouse, significant other is. I hate that.
Cancer forces us to grasp, tear, crawl, scream, cry, along a path which has no end - except death. No matter the efforts of friends, family, it's a lonely future that we face.
(I have stage III multiple myeloma; failure of stem cell transplant/can't have another. And am sick & tired of those who tell me about their friends w/MM. Everyone's situation is different.) Hang in there Vicky. Love,
Maryanne

Sent by Maryanne | 9:04 PM ET | 05-17-2007

I wonder if Al could give the website of the melanoma blog mentioned today.

Sent by Camille | 10:19 PM ET | 05-17-2007

Dear Anonymous,
I can relate, a little, to what you are going through with your husband and his inability/unwillingness to talk about your disease. My wife will not bring it up, ever, and does not like to speak about it, ever. I'm not sure she realizes what she's doing but not having her to talk to about this is one less avenue for me to help get things off my mind. My friends aren't quite sure how to talk to me either and that's weird too. I try talking to them like I always have but they seem different now. It's odd how people react to difficult spots in their lives and how friends and family react to those diagnosed with cancer or some other terrible malady. I hope and pray that your husband will come around and talk with you about your diagnoses and "be there" for you in some capacity.

Sent by Tom DuBois | 8:50 AM ET | 05-18-2007

Leroy and everyone

I was silent about my cancer experience for 30 YEARS... when I was diagnosed in 1975, there were no blogs such as this.. hell there was no internet at all. There were no support groups... in effect no one to talk to, commisserate with or anything of the sort...

In the last 2 years I have FINALLY begun to speak out both for myself and with/for others and I have to say... WOW has it helped me to finally deal with those feelings and experiences. I in effect shut down ALL my feelings for those 30 years as a way of not having to face my own fears.

Someone recently told me they were "cured but had to heal"... that is so true. I was apparently cured (after 32 years I guess I can consider myself cured LOL) but it took me 30+ years to be healed and only happened once I was able to finally begin TALKING about it with others who understood!

So to "anonymous" (and everyone else).... you MUST talk to someone about your feelings fears and all.. this blog (and others like it) are a FANTASTIC place to start!

I commend you Leroy for your generous contribution to ALL our healing!!

Sent by Ronald K. Bye | 10:24 AM ET | 05-18-2007

Dear Leroy, Anonymous, Bruce, et al - Thanks so much for all of this. I've listened to Leroy on NPR for months and watched the recent Discovery special on cancer, and started reading this blog, and it's been wonderful. Cancer was not responsible for my husband Don's death, AIDS was. He was 46 and I was 35 - and that was over 14 years ago. I knew he was HIV+ when we married and we had just over four wonderful years together. You have to talk about it if you feel the need. And you have to be honest; it really is the only way. Scary as hell? You bet. It's especially scary when you are living with a disease (or someone who has the disease) that some people might want to find a way to blame you for having - or justify in their own mind that you deserve having. I remember that Don and I sometimes avoided talking about the "what ifs" because it felt like we might be "bringing it on" if we did. But, that wasn't true. Talk to each other, talk to a friend, write about it here; it's all good for you. I remember on our 4th anniversary admitting out loud to Don (on the phone) that we wouldn't see our 5th - and we didn't; he died 6 weeks later. I also remember that, in the weeks and months (and years) after he died, I wondered to myself "What if I never get over losing Don?" ...and then... "What if I DO?". The truth is, you never get over it. But, in time, you do get through it... It takes effort to be a survivor...and to face things together...and to be scared...and to be hopeful...and to win...and to lose. But, I'm here to say that it's all OK. In some ways, facing such a terrible disease with Don was the best experience of my life. Of course, in other ways, it was the worst. Some days it's hard to get up in the morning; on others you're afraid to go to sleep at night. It's best to be honest with yourself and with each other. You just have to be who and where you are. Since all of this happened I've said many times, "life goes on whether we like it or not"... So, none of us has a choice but to keep going. Know that it's allright. I have a new life now, but the old one is still very much a part of me. I wouldn't have it any other way. Whether it's cancer or AIDS or Alzheimers or ALS or some other terrible disease - we all face similar life and death experiences and we have to cope in similar ways. We all end up having to learn to speak the same language.

Sent by Jan Richardson | 8:03 PM ET | 05-18-2007

I was diagnosed with bladder cancer at age 37 in November and found out I had a recurrence May 1. So back I went for more surgery and chemo last week. But I felt good enough to walk with my fiance in the survivors' lap at the American Cancer Society's Relay for Life three days after my latest surgery (though it took all of my strength, believe me). I feel for "anonymous" and her husband. Many times I think my cancer has been harder on my fiance and especially on my parents.

Leroy, I saw you on Ted Koppel's show and I'm so glad you have enjoyed your Hawaii trip.

Be well, everyone.

Sent by Lisa Lindstrom | 9:25 PM ET | 05-18-2007

I saw special on television just prior to being diagnosed with terminal Leiomyosarcoma. My first instinct was to do just as you have done and reach out to others. The support and encouragement I am getting from friends and strangers has sustained me and I feel as if they are holding my hand as I walk this very lonely path toward an unknown door. Thank you very much for sharing your own journey and my prayers and good wishes go with you.

Sent by Brooks Best | 4:56 AM ET | 05-20-2007

It is so hard to be alone. When I found out my lung cancer came back I called my son and told him and I was so upset, I asked him to come home and be with me. He refused. I asked him to go to the ER with me recently after we had just moved to a city where no one knew I had cancer, and so I had no support,and the Drs. thought I had a brain bleed, and he wouldn't go. It was so hard being in the ER alone. My daughter left to go live with her father and didn't speak to me for a year. the day I came home from the
hospital after I had my lung removed, they went to their dads and told me to call them when I was better. I didn't have a home health aid because they lived with me. I was too
embarrased to tell the doctors they left.Now my son tells me he doesn't feel like he should have to go to the hospital and "baby sit" me.
I read all these comments about these people who help their parents. Where did I go wrong?

Sent by Cathy W | 1:28 PM ET | 05-21-2007

To Cathy W.

I am just a new mother myself...I cannot even begin to imagine the hurt and sorrow you are going through. I think for some people in our lives, they do NOT know how to cope with the cancer. They do NOT know how to deal with emotional rollercoaster we go through. My heart goes out to you...I encourage you to post your feelings here. Although we can't physically be there with you in the doctor's office, we are there in spirit...atleast I am! I've just started this cancer journey and I can't imagine going at it alone. I don't know how old your children are or the circumstances behind their reluctance, but please know that WE are here for you...please know that you are in my prayers and you always have a place to turn to when you are down. Stay strong and God Bless! Hugs from KY!!!

Sent by Tess from KY | 3:51 PM ET | 05-21-2007

Thank you. My kids are just teenagers (14 and 15 when I was diagnosed, 17 and 18 now) and this has been very tough for them, I know. Thank you so much for your post! I know you have had a hard time recently, and we really are there for each other. I must have been feeling sorry for myself, and I (we) really have alot to be thankful for, even with our problems, I know. I haven't been reading this blog as often as I should, either, that would help my mental health!

Sent by Cathy W | 5:14 PM ET | 05-21-2007

Jan--

It's OK. Terry didn't die from cancer, it was more kidney failure and waiting on a transplant that never came.

But this family has become such a vital part of life that I can't imagine going on without it. I read--and cry--over every day's posts.

Sent by Bruce | 8:17 PM ET | 05-21-2007

Ever since the special on Discovery, I have been reading the blogs every day. I can't tell all of you how many times I have started to write a comment but just can't seem to get through it. I'm afraid to acknowledge in any way that this is real. My dad was diagnosed with liver cancer just days before the documentary aired. It was hard for me to get through watching it, but I'm glad I did. As scared as I am, I know that it's o.k. and that I am not alone! My dad hasn't really talked about it much since the diagnosis. He has always been the strong, silent type. The rock of the family. Even though he tries to hide it, I can see the fear in his eyes. The sparkle is gone, and there is such a sadness to him now. My dad is dying and I want to scream. This is all so new to me. I just don't know how to do to help him.

Sent by Karen Zenkert | 10:44 PM ET | 05-21-2007

Bruce, thanks for your comments. I just identified so much with your posts and remember being there - even if it was a long time ago. Yesterday I was just looking over a letter I wrote about 3-4 months after Don died and saw such similar feelings and experiences as you (and so many others) have shared here.

To everyone, this is such a healthy thing we're all doing - for each other as well as ourselves - in this blog. Thank you to Leroy for getting it all started. It just shows how universal these life and death experiences are. Would that I had such a place to express my worries and concerns so many years ago. But, I'm discovering that I'm a bit surprised to learn how helpful it is to me now - nearly 20 years after my journey began. In part, I can let people know that they can get through it - and in another way, it helps me to continue some of my own processes that have been underway for years. I am not sure that we ever "complete" anything. That's why they say life is a continual journey...and how much better life is when we learn something new every day. Some lessons are more painful than others, though...

Sent by Jan Richardson in Olympia, WA | 12:59 PM ET | 05-22-2007

Leroy:

I, too, started reading the blogs after the Discovery documentary. What you said in this blog last week really summed up my feelings. I had my last chemo treatment for breast cancer one year ago this week. But I still try to go to the weekly breast cancer support group our Cancer Center sponsors, not because I feel the need for the support but because, like you said, I feel the obligation to be there for others just as the group was there for me when I showed up 2 1/2 years ago newly diagnosed--scared, confused, and overwhelmed with all of the information/options I was given. Those women who shared their experiences and insights helped me to determine the course of treatment that was best for me and then supported and encouraged me through surgery, reconstruction, infections and chemo.

From the time I was diagnosed, I would talk to anyone who would listen (and some who wouldn't). Because if just one woman, wife, mother, sister, daughter scheduled a mammogram because of my cancer it was worth it--and several told me they did. But last week I received a phone call from an aquaintance I had talked to last fall who decided, after my prodding, that she really ought to get that yearly exam/mammogram that she had put off for several years since she was active & healthy. She called to thank me for the prod as they discovered she had thyroid cancer and a tumor (thankfully benign) on her liver.

Maybe we can't prevent cancer, but our stories may help others to take the steps to catch it early and improve their recovery.

Sent by Rita | 7:55 PM ET | 05-23-2007