My dearest friend was just told he has lymphoma. The doctor was only using the words "inconclusive" to describe his needle biopsy until yesterday, when he was hooked up to a pre-op IV, he slipped into conversation that there were, in fact, lymphoma cells found. The surgery was to perform the open biopsy to see just what were facing. I know I will be there during treatment, but I don't know what to expect. I've been strong as nails for him through all the onslaught of doctors and tests, but this one I don't know how to prepare myself. I almost asked the hospital if I could volunteer in a chemotherapy center just to see what I'll be facing, but I don't know. I guess what I'm looking for from anyone is answers. As someone supporting a loved one through this fight, what can I expect? His appearance, his mood, etc. Anything will help: ErickLjung@gmail.com.

Sent by Erick Ljung | 10:47 AM ET | 07-25-2006

My mother used to say, "Tout verite nest pas bon a dire." Roughly translated, it means not all the truth is good to say. So, while honesty may be the best policy, one (especially a cancer patient) must decide just how much truth one wants to dish out at a time. I also find that my family and friends can only handle so much at a time. And maybe I can only handle so much at a time, too. And what is the truth? In October I was diagnosed with stage III pancreatic cancer, wrapped around the left kidney and the small instestine. Five lymph nodes were also involved. That is the truth.

I had surgery, chemo and radiation. We have come to the end of the treatments. I have had my first scan. Everything seems to be okay that is the truth too, and one people seem to be able to handle just fine.

But the other truth is that the prognosis is still quite poor. The statistics for pancreatic cancer majorly suck! And those are the ones for people with stage I. I look great and I feel good, too. So if I allude to the stats, and mention that it may just be a little early to be breaking out the proverbial champaigne, I am told not to be such a gloomy gus and implying that I have made it. I've stopped arguing with them. I don't want to believe the stats either. (As my son says, "If statistics were everything, one of us would be Chinese.) But I won't be surprised if, indeed, I have a recurrence.

I also want to believe that I am cured! Wouldn't that be lovely?

Sent by Stephanie | 9:31 AM ET | 07-26-2006

When I was diagnosed with stage IV lymphoma and given a 1 out of 5 chance of survival four and a half years ago, I had to decide about whom to tell about it and how much to say.

All of us can come up with excellent reasons for withholding the truth. Over my lifetime, I've learned that when I lie, it is mostly to protect me from some consequence I fear. To achieve the peace that I value so highly, I've had to learn to overcome the fears that led me to tell falsehoods. So I've worked to live a life that puts integrity at the core of my value system.

My friends, family, spiritual community, and business associates all know about how much I value integrity and they are people who feel the same as me. For me to abandon such a central part of my life would be allowing my cancer to destroy more than my body. It would be showing a lack of faith in my community to hide the truth about my condition.

I would be letting the illness destroy and important part of my soul. That wasn't how I wanted to be remembered. What I feared more than death was that I would lose my integrity to cancer.

I opted to let my community know about my condition and sent emails to them after each doctor's visit and have been thanked for doing so.

Sent by Free Polzzo | 9:36 AM ET | 07-26-2006

Like everything else in life the truth about your cancer has to be addressed in degrees. I was always upfront with my family because I knew that no one can get through this alone and I needed their help. The further outside the circle a person was, the less I was likely to tell them the details as it just wore us all out.

The truth is I am a cancer survivor and case study because I have beaten all the statistics thrown at me from type of cancer to age to years "dancing with Ned" (no evidence of disease) and I plan to keep on wrecking the curve. And those I love will know each step forward and any steps back because we are all in this together. It may hurt them in the short term to know, but in the long term it will help all of us face what ever is ahead with our hearts full and our minds focused.

Sent by Chris | 9:55 AM ET | 07-26-2006

I told my family and some close friends about my cancer but didn't have the time or energy to tell acquaintanc. On chemo, you ration your energy because you know there's not so much of it available.

Even with a loving family and friends, I do at times feel alone and lonely this is my "battle" and until they walk in my shoes, which I fervently hope they NEVER do, they can't truly understand. I also don't want to continually burden them with all of my medical information or my fears and hopes. I don't want them to be sad, and I feel bad enough about having dragged them through all of this trauma with me. I guess I feel responsible for making them sad and disrupting their lives.

I am not an especially touchy-feely person, but I joined a support group, where we talk quite bluntly about how we are feeling, or about anything that comes to the surface. This has been the most tremendous help to me. We share information, advice, dark humor or we just listen. This is not a depressing, negative group at all, as some people might think. We share a common experience. I have met some wonderful people who understand my situation, and I don't have to worry my family and friends with a lot of my thoughts and fears. That's how I found some level of balance. In my busy life, I do make the time for this group because the group gives back to me so much.

Sent by Maggie | 11:01 AM ET | 07-26-2006

Going for my 4th chemo this morning. Can empathize with you on the tiredness and fatigue bit.

Might want to check further into this:

http://www.philly.com/mld/inquirer/14842932.htm

At $110-per-IV pop, should be obvious the medical and pharmaceutical companies have no interest in further research....

Sent by Dave Adams | 11:10 AM ET | 07-26-2006

Leroy....A-MEN! I had a painful conversation with my brother about this issue a few months ago. He'd told me that he couldnt cope with dealing with my cancer a few months before, but I thought that he meant because of many difficult issues in his own life that were at crisis stage at the time. I was wrong. He meant he didn't want to hear about my cancer because he couldn't cope with it. I told him then "If you think it's difficult to hear about, imagine being the one in the doctors office hearing about it, and it's you!" None of my immediate family can handle this truth. I'm lucky...I have some dear friends who've been able to be with me and hear me out throughout this long, lonely and VERY rocky road. I also found breastcancer.org nearly two years ago, and the chat room that is on this educational site has been a source of great camraderie, encouragement, hope and information all along the way. I greatly recommend it to any woman or man with breast cancer.

The loneliness of having cancer is there for all of us, I suspect. It's a cliche, but I believe a true one that having cancer, and all of its attendant fears, grief, anger, physical changes and anxieties is impossible to understand to one who hasn't gone through it. I am a nurse, and thought that I had some idea about it until I was diagnosed myself. As I've mentioned before, my own oncologist was honest and brave enough to tell me that he has no idea what it's really like.

We learn to speak in generalities about our situations and to find support where we can. My prayer for all who are diagnosed with cancer is that they know how to ask for help and support when they need it, and that our medical establishment and our society get better at providing it.

Hester Hill Schnipper said in her book "After Breast Cancer" that cancer patients after treatment are like drowning people pulled out of a lake, and left gasping on the dock. I mentioned that to my cancer rehab doctor last week, and she said that it's true, and she's going to the Mayo Clinic to do research on how to improve the quality of life for us all. God bless her, and all of us.

Sent by Nancy K. Clark | 11:19 AM ET | 07-26-2006

Dear Leroy,

Most of my whole family has been cursed with this deadly disease. I lost my father ten years ago to lung cancer, four years after that, my brother-in-law to colon cancer, 7 months after that, my mother to bile duct cancer and I now have two sisters inflicted with cancer at the same time. Last week my oldest sister had a mastectomy, and the youngest has IV stage ovarian cancer.

It really is true that it is just as hard for someone on the sidelines. I feel my heart being ripped apart watching my sisters going through this horrible disease; sometimes I wish it was me instead of them.

How you all get the courage and strength to fight this battle is amazing. I wish you all the best and you are in my prayers.

Linda

Sent by Linda | 11:23 AM ET | 07-26-2006

I, too, struggle with how much to tell people. The casual acquaintences are easy. All they really want to hear is how I'm feeling today. But those who ask for more information are harder. They really want to know. Breast cancer is one of the more common cancers, and many people know that stage IV is considered terminal. I don't want to walk away and have the person I was talking to sadly shaking their head and saying, "Poor Paula doesn't know she's going to die of this." While I have hope that I will be in that 3% who have metastatic breast cancer that goes away and never returns, I know the odds are against me. I'm afraid telling the truth for me comes down to pride. I want them to know I know.

Sent by Paula | 11:38 AM ET | 07-27-2006

I love your blog. It is very enlightening and helps me remember how precious life is. Thank you.

Sent by Adam Miller | 11:40 AM ET | 07-27-2006

As one of the friends and family crowd, I really cannot understand what it is to be the one with cancer. And I don't understand those who don't want to share whatever they can with their loved one. For me, part of being a friend is being there when times are tough.

About a year ago, I heard a saying which changed my life. The person said, if you don't share with others, you are denying them the opportunity to be there. The individual was coming out of an assumption that the relationship was formalized by marriage and if you spared others, you were denying them the chance to live up to their marriage vows. But I realized then that 1) living a compassionate life sometimes meant sharing the pain and 2) that closeness comes from being more honest about the negative things.

No one's situation is the same and I cannot even begin to guess at the emotional burden of being the one with cancer. But I so want to reassure all of those who feel responsible for the pain their cancer causes that they are not responsible for the pain others feel. Grief and pain are part of living. How sad it would be to stand at a graveside knowing that the person you loved did not share the news that the prognosis was grim. What might you have said or done that you will now never get the chance to do?

Sent by Naomi | 12:01 PM ET | 07-27-2006

Leroy: I hope you know what a valuable set of insights you are providing to those of us who have dealt with cancer in our loved ones and ourselves. Your openness is incredible and I am sure it is sparking all sorts of positive interactions between cancer sufferers and their loved ones around the world. You are in my thoughts and prayers, and here's wishing that this blog runs for quite some time! God bless!! Carpe Diem!

Sent by Jack | 3:56 PM ET | 07-27-2006

Thank you, Leroy; I read your blog every day. And thank you, Nancy K. Clark, for your comments, which really hit home. My family didn't know how to react with my diagnosis of cancer: a year after, my brother still won't talk much about it (he can't deal with it); my aged father is oblivious; my mother's awkwardness could be heard in each telephone call until I finished my treatments, and only then could she comfortably wish me well. My husband must have been in total denial; he worked all the overtime he could. Friends who have been touched by cancer in one way or another became my support, and for each and every one of them I am so grateful, as I also am for the tremendous care from the medical staff at my oncology center. Cancerland is such a confusing place for the diagnosed, but I wonder if it isn't more so for family members or friends who are struck dumb with fear or incomprehension at the mention of that word, cancer. It is a new place for us all.

Sent by Maria | 4:48 PM ET | 07-27-2006

How much I told people depended on their ability to process and deal with the information. With friends who had gone through cancer, I could share details and ask for advice. Honestly, the majority of people who have not had cancer or had someone close who had cancer are not going to want to hear the gory details.

It was amazing to find out how many people around me had had cancer that I did not know about. Total strangers that heard about me from mutual friends called me to share their stories.

One of the best things that came out of this experience was the sense of community and belonging we had as friends and co-workers responded with support. It is interesting who responds and who does not. Some of my closest friends never acknowledged what I was going through; I think it hit too close to home. Some people told me they did not know what to say. I told them that just saying something like, "I am so sorry" was better than silence.

Hang in there. Hope is very important.

Sent by Cynthia | 10:50 AM ET | 07-28-2006

My mother has Parkinson's — not cancer, with its threat of imminent death. Instead, it's a condition that continually and progressively makes living harder and more limited. Reading this entry and these comments, I realize that I have been one of the people who haven't wanted to know. I know my mom is sick, I know its getting worse, I hate that she has to live with it and I am very aware that I don't. I want to sympathize, empathize, and help, away at school as I am.

But on the phone, she keeps talking about details. We switch from her latest project to an extended description of the newest ways, or the same ways, that it's getting worse. I've listened, but somewhat impatiently. What is the point of what she's saying, what can I do? Why is she going on again about things I already know are happening?

But of course I only know abstractly, while she lives them. As much as I think I'm somebody who's there for people, I realize that I've wanted to be comfortably on the edge of her disease: learning about what happens, reading studies about experimental treatments that may or may not help, passing on info, knowing what stage of symptoms she is at so I have some idea of what things are getting hard for her to do.. I've wanted to make sure she is still safe driving, I don't want to listen to five minutes of how the pains and tremors are traveling down her leg. I've been thinking that knowing she's sick, and expressing sympathy and hope, is enough.

My poor mom. She has no support group where they can share all the nitty-gritties of life with Parkinson's. Reading these comments has helped me realize the ways I've been failing. Its not just about whether I want to know the truth, it's about whether I'm willing to let her share the experience.

Sent by Suzanna | 1:03 PM ET | 07-31-2006

Leroy,

I just discovered this blog a few days ago and wanted to thank you. So much of what you and others post here mirrors my own feelings and experiences. As for being honest about one's prognosis, well, my feelings about that have evolved over time. At first, I couldn't really face the truth myself. Every time I saw a chart with survival rates, I'd quickly close the book. Now, after more than 6 months of chemo and about to begin radiation, I am gradually facing "the odds" and consequently, sometimes I am consumed with fear or sadness. But my husband doesn't really want to hear anything remotely negative. Yet he is going through this with me, always goes to chemo with me, is incredibly loving and caring.

People are just different about what they can take in and maybe about when they are ready to take it in. I also don't talk to our children (young adults) about my fears nor about survival statistics, to spare them more fear, I suppose. But they are there for me, and that's what is important! When I need to talk more openly, I go to my breast cancer support group or go online to this site or breast cancer.org. One of my pet peeves is the way people say, "A positive attitude is everything!" or praise my courage. What about all those folks who had positive attitudes but died anyhow? And who says I'm so courageous? Its not like we have a choice. We endure it because we have to. This morning I went through three painful "sticks" and two nurses before they finally got the I.V. in for chemo. And I just learned that my "miracle drug" Herceptin has damaged my heart, so I'll probably have to go off it after 15 doses rather than the expected 52 weeks. Meaning my prognosis just got a lot worse. And I'm still trudging along, trying to smile. Does that mean I'm brave or have a positive attitude? Nope - I just have no other options. I guess I could curl up in a ball and cry all day, but what would that accomplish?

Anyway, thanks, Leroy. I wish you well.

Sent by Doris | 1:17 PM ET | 07-31-2006

Cherie is my Mother this whole cancer thing is horrible--Yes I had to and still do have to remind my brother that Our Mother is going to die and yes it will be cancer--My Mother is a very strong woman and we all wanted to believe she could bet this, she waited last to tell me cause she knew I would be the one to research and know the truth. This is the hardest thing I have ever had to live threw watching My Hero, My Rock fade away and become human for the first time. She volunteered to be 1st for an experimental therapy not yet approved in the U.S. so that in the future others might live longer or survive. My Mother has always been the strong one will dealing with illness, but I think as her daughter no matter how much is hurts to know the truth--I wanted to facts cause they don't change the HOPE we all carry on each day.

Sent by Shannon | 7:11 PM ET | 04-30-2007