I live in cancerworld, too. Sometimes I want to be treated "normally," but other times I feel that I want to scream out -- "can't you people cut me a break, can't you see what I'm going through?!" In my experience there are lots of friends and loved ones who now expect me to act like nothing ever happened, and that's obviously not true, as I have moved to cancerworld, and things have changed.

Sent by jane | 8:11 AM ET | 04-18-2007

I wonder if what we cancer patients feel is akin to what Adam and Eve felt after eating the fruit of the tree of knowledge?

Sent by Stephanie | 8:45 AM ET | 04-18-2007

Cancer world. I woke up in the middle of the night last night wondering if I will ever think about anything else besides cancer. I hate that! I think about chemo, the side effects, how crummy I'm feeling, how I am not at all interested in food and have to make myself focus on eating. Today I hate being in cancer world. "Normalcy" seems like a distant memory. Some days, some times, being in the middle of treatment and my diagnosis doesn't weigh so heaviily, but today it does, and you struck a chord, Leroy.

So, I do appreciate it when friends and loved ones stike up a conversation about a TV show or their latest personal drama, or even the weather. I don't want it all to be about me and my cancer diagnosis. Thanks for pointing out both of these things in your post, Leroy. As always, I appreciate what you have to say - and I enjoyed the Talk of the Nation show on Monday, even though it was too short!

Sent by Lynne Dahlborg | 8:51 AM ET | 04-18-2007

how true ,your words of what "we" want as cancer patients...yesterday , a parent stopped me in the hallway to proclaim that the "old" marianne was returning. she was referring to my eyebrows, which are now visible. and then she loudly proclaimed, as if she was an expert, that "see everything will grow back , it just takes time". now mind you, i did not ask for her proclamations , nor did i wish to be singled out for that matter; but for whatever reason she now observes that i must be "back" and feeling well because she can see my "eyebrows".....God willing, may she never see the true face of cancer! :) have a wonderful day today , my blog family!

Sent by marianne dalton | 8:55 AM ET | 04-18-2007

People, we have to remember something here. People making these comments are our loved ones and our friends. They are hovering around the outskirts of our cancer world not knowing what to do, say, and feeling extremely helpless but wanting desperately to help. I sometimes wonder what is harder, living with the cancer, or standing by, watching helplessly. Sure, I sometimes think that some of the comments and reactions are stupid and unnecessary, but I have to remember that these people are trying to cope with the potential loss of us. I'd rather live with their coping attempts than have them do nothing at all. That would be tragic.

Sent by Kathy Bauer | 9:32 AM ET | 04-18-2007

When people see me they say "Wow, you look so good!" Why? Because I am thinner. I have acutally had women imply that I am lucky I lost all that weight. I always remind them it was not an easy diet plan. I struggle with the new normal everyday. Anxiety at every ache and pain, about the next scan, guilt about my family - never ending. I hate hearing reports about how eating vegetables stops cancer (implying we all ate junk food all our lives).
Thanks, Leroy, for giving us our anonymous support group. Mary

Sent by Mary C | 9:52 AM ET | 04-18-2007

I liked Stephanies comment about Adam and Eve and the loss of innocence; once we truly see that MY death is not necessarily somewhere off in the distant future when we'll be "ready", we are forever different. And, as has been mentioned here often, this new awareness, in addition to the horror it brings, sometimes reveals a grace, a paradoxical profound serenity that is beyond understanding.

Thanks Leroy and thanks for the insightful comments everyone.

Sent by mac | 11:43 AM ET | 04-18-2007

I am going to make a comment that may be very controversial. Monday's Talk of the Nation discussion of this blog really bothered me. In the time it took me to articulate and write my thoughts, today's entry appeared and it reinforced my concern.

I do not mean in any way to diminish anyone's experience or the value to some of sharing those experiences. However, I really have a problem with the premise that we who have received a cancer diagnosis are all citizens of the Cancer Nation.

Cancer is not one disease. Some cancers are horrific and tantamount to a death sentence. Those afflicted do spend the rest of their many or few days dealing with the disease in one way or another. Other cancers are, frankly, little more than an inconvenience - a speedbump on the road of life. We who have had such diseases can thankfully move on. I may have visited Cancer Nation but I was just passing through. .

In the same way that I cannot fully identify with citizens of a country I have only briefly visited, I cannot relate to the experiences of those with bad metastatic cancer. Yet, the idea of Cancer Nation defines me as a compatriot of someone who has a very different language and lives in a very different culture from me. That does both of us a disservice.

Ultimately, I think that lumping all cancers into one pot is harmful. It causes unnecessary fear of manageable, or even cureable, disease. It also diminishes the challenges and accomplishments of those who face aggressive metastatic tumors, debilitating treatments and radically shortened life spans. .

Doris' comment about "Other" speaks to my point. The "one cancer fits all" notion brands us all with the same perception of our fate and our fitness. Consequently, I have told almost no one outside my immediate family of my disease. I refuse to be defined by other people's misperceptions of the disease I had and hopefully no longer have.

Unfortunately, the discussions I heard on Talk of the Nation and my brief perusal of the blog reinforce the idea that cancer is cancer is cancer. It is not. I may have (had) cancer but I am NOT a citizen of the cancer nation.

Sent by David | 11:47 AM ET | 04-18-2007

I would like to go "off track" and respond to Gabriela's post on the 17th. She wrote that she has lost her insurance and cannot find a new company to cover her. All I can say Gabriela is I am so sorry. I can't imagine anything worse for you right now. The truth is you will probably not be able to find any coverage. My insurance is one of the best policies that money can buy and my oncologist is threatening a class action suit because they won't cover Procrit. I have been extremely anemic from the chemotherapy and one excuse was that my levels were not low enough. I ended up in the hospital in February and had two transfusions. When my oncologist called the physician at the insurance company to find out why, the staff told him that they had neglected to check a box that asked "does the patient have uncontrolled hypertension?" Apparently if I did, they would approve the Procrit. I don't, so they left it blank. When my oncologist tried to explain this, the Dr. said then you should have written "not applicable." Despite much subsequent shouting and the threat of the class action suit, my levels are still so low that I am short of breath and unable to be out of bed for more than 4 -- 6 hours a day. My insurance agent says, DO NOT ROCK THE BOAT. If there is any way that I can get through this without the meds, do it. My husband and I have paid for this same policy for 25 years and have never had a major medical expense. But I live in fear every day that they will somehow find a way to discontinue my policy, too. This action would be catastrophic! There is no way I could cover the literally tens of thousands of medical bills. My story is not such a sad one, as it is a pain in the a--. The story of a family in our community right now, however, is indeed sad. Their 15 year-old son was diagnosed with an aggressive form of leukemia. He will die without a bone marrow transplant. His father lost his job months before the diagnosis and the Cobra payments for the insurance quickly depleted any reserves they had. Now they are without insurance and facing the most monumental fight of their lives. They are struggling to save their home. In a perfect world we would like to think that we can just go through the treatments and concentrate on recovery. In the real world, however, we are forced to choose between being able to even buy food for the family or pay the medical bills. There were times when I said I'm sorry I ever started this. What have I done to our family, to our future? What a sad commentary for all of us less fortunate for Gabriela. I wish you well dear soul. Maybe Leroy can give you some advice.

Sent by Patti | 12:06 PM ET | 04-18-2007

I'm new to Cancer World. My dad was diagnosed at the end of 2006 and we're just getting started with the treatment process. So far I have been surprised by the amount of support we're finding in our community and in complete strangers. On the other hand, the insurance company seems to look at my father as a stack of charts and bills and is denying treatment because it is categorized as research. Why is it that the only group not showing compassion is the one from which we need it the most?

Sent by Riah | 12:30 PM ET | 04-18-2007

I agree with Leroy. I don't like being "different". When I was going through treatment I asked friends and family to tell me what was going on in their lives as I didn't want to talk about my problems. Now everyone says how good I look and what a "survivor" I am. I don't like that either even though they mean well. I just want to be normal whatever that is. I am still not the same - a friend was visiting and we did wonderful tourist stuff which took my mind off bad things but I got very tired still. I still have a mediport in and tests to go through so I don't feel like anyone else or normal. God Bless you for giving people a chance to read about your feelings and present their own. I find this blog to be highly intelligent and agree with most of the comments. We are all brothers and sisters and share similar feelings which is good and comforting to know.

Sent by Vicki | 12:31 PM ET | 04-18-2007

I completely agree with Kathy Bauer!

Even in the "normal" world, people screw up and are inappropriate all the time. I think it is important to look at motive. If the motive is to reach out and be caring, then I say embrace it with all its warts. Or, push the person away so he knows not to do whatever he did again.

xenophobia isn't confined to cancer patients. It's all over the place. Different skin color will do it, a handicap will do it,whatever makes you different from me makes you different from me. How I deal with that is the measure of what kind of person I am.

I try not to treat people differently because they are cancer patients unless they ask me to. I figure cancer or not, we're alive in this world together and share the bond of humanity. That bond is sacred to me.

Sent by Diana Kitch | 1:34 PM ET | 04-18-2007

Being in cancerworld affects us all, whether you have cancer or you are the family of someone with cancer. Of all the reasons to hate cancer, I hated how it changed my daily relationship with my father. He was a strong, wiry, independent kind of guy. A man who could build a house and till the ground. After his cancer came back, so much of our discussion was about cancer. Where were the most promising treatments? What clinical trials did he qualify for? Scanxiety and all the other crap that goes with the treatment. There were still discussions about how the crops were doing and what was going on in the world but the cancer bully was always there. Always trying to be at the front???

Sent by Brooke | 2:06 PM ET | 04-18-2007

David:
I understand your feelings, and your comment. There have been a number of our Support Group members who have spoken of now being Cancer free. I certainly hope they're right.
There is another view, one I ascribe to. Cancer was there, Cancer may still be there, lurking. You never know when there might be a reocurrence. There are certainly enough examples in our "Country".
You spoke of a speedbump on the road of life. For many of us "it" all started as a speedbump, now it has morphed into a mountain. It just took some more time on our personal "road".
I hope you don't take my comments as pessimistic or morbid, they're not meant to be. Being realistic and enjoying life are not mutually exclusive things. It's just that I've seen and heard enough to realize that "it ain't over till it's over".
You said, "I have told almost no one outside my immediate family of my disease". By writing in today to Leroy's blog, you just told many, many people about your Cancer. I hope it felt good. Keep writing, get it off your chest, it really works.
Would you be willing to accept a passport to our Cancer Country, just for visits? (Please excuse the levity, it helps sometimes.)
Don

Sent by Don Winslow | 2:23 PM ET | 04-18-2007

Leroy, I remember in one of your past posts where someone said something like "compared to your problems mine seem insignificant". Remember? I've thought about that often and have consoled others by saying something very similar to what you said. You're problems are just as real to you as mine are to me. Cancer may be another world but it is up to us, as well as TV to educate others. "We teach people how to treat us." I am feeling pretty good today, in case anyone wants to know. I'm still home recuperating and doing my job which at this time is trying to eat all day long to fatten up. It seems so strange to me to try to get fat, before Cancer and all my life I've had to work hard at dieting, I was always overweight. Careful what you wish for, could never be truer. I'll be thinking of you Leroy when you get your scan and praying too. I go on Monday for mine, wish me a successful scan too. Happy Scanning!

Sent by Ruth White | 3:08 PM ET | 04-18-2007

In two hours I'm having my annual bone marrow biopsy. I'm four years out from a stem cell transplant for treating leukemia. This procedure and many others like it remind me daily that I am part of the Cancer World, or Cancer Club as my cancer survivors and I call it. I think we all live in fear that the other shoe will drop and the seconday or recurring cancer of which we are all warned will become reality.

Sent by richard verver | 4:15 PM ET | 04-18-2007

RE: Davids comment, Thank for visiting cancer nation. Your attendence is volentary not required. Good luck.

Sent by Ron | 5:31 PM ET | 04-18-2007

David says he visited Cancer World but didn't stay and doesn't want to be considered a citizen. I can sympathize. Three years ago I was diagnosed with prostate cancer. I had it excised and the surgeon came to see me afterwards and said 'I have good news and some of the other kind'. The good news was that the margins were clean and it had not spread to nearby lymph nodes. The bad news was the Non-Hodgkin's Lymphoma in the lymph nodes. It's the Fred Thompson variety, marginal zone B cell and I am asymptomatic. But also Stage IV because it's in my marrow. I would go days or weeks with out thinking about my cancer if I did not have My Cancer on my home page.

I have stared into the abyss of a truncated life span and retreated to sunnier landscapes but I do not want to forget what it felt like or the way so many things were brought into focus for me.
I come here everyday, something of a voyeur, but also as a form of meditation as people might go to read passages from the Bible for inspiration. I come here because I learn valuable things from Leroy and the regular contributors about how to face mortality and how to behave when the body is failing.

David, spend some more time reading the blog. No dogma or catechism or citizenship is required.. Don't forget that we all live in I'm Going To Die Someday World.

Jim Weaver

Sent by Jim Weaver | 6:07 PM ET | 04-18-2007

Wow - lots of great thought-provoking responses so far today - enough for several different columns for Leroy to work on.

Let me first respond to Leroy's (and Doris') original post - yes, I'm in Cancer World and I do want to return to normalcy as soon as I can. By my appearance alone, I feel "separated". Those of you who are receiving Erbitux know that the skin rash that accompanies treatment can be visually disarming and a little unsettling to those who don't know the story. When I spoke with the progam person for Talk of the Nation about being a guest on Monday's show, I noted that I had a "face made for radio". I have felt that sense of revulsion and pity from people because of my appearance, but at this point, I don't really care. I may be ugly now, but the Erbitux appears to be killing my tumors, and I'd rather be ugly than dead.

To David - nobody wants to be a citizen of Cancer Nation. You are fortunate that all you have to show is a stamp on your passport that you passed through here. Certainly the "One cancer fits all" notion is not valid - those of us in the "nation" have come to realize this as we interact with other patients and learn about their cancers. But for those people who live outside of our "nation" and have limited or no knowledge of what cancer is, "one cancer fits all" may be all they know. One of the benefits of this blog is that it gives people outside the nation a chance to see that there are many cancers that we live with and hope to be cured from. While you and I probably don't have the same type of cancer, we probably have more experiences in common than you think. When you were first diagnosed, you probably had the same "oh s***, now what do I do?" that most of us had. And while you are fortunate to have had your cancer be treated effectively, I'll go out on a limb and bet that the thought of "what if it comes back" has gone through your mind at least once. These are just two examples of the common experiences that bring us together in this blog and make us unwilling members of Cancer Nation (or Cancer World, since there is no political or geographic boundary). And in a certain sense - cancer is cancer is cancer - it all sucks. No, it's not all the same but it all sucks. What you heard on Talk of the Nation and what you've read so far in this blog is not an attempt to lump all cancers together. Please take the time to go back and read a few older posts - you'll see that we've had comments from all kinds of patients with a galaxy of experiences. After you've had a chance to learn more about us and this blog, you are more than welcome to leave the nation, and hopefully you'll never have to pass through it again.

Sent by Bob Maimone | 6:17 PM ET | 04-18-2007

My life changed this year when my mom was diagnosed with cancer. What I did not know, among many things I did not know, was that life would continue to change and change and that the diagnosis and treatment would be impacted by so many "non-cancer" threats and conditions. Our family is hurting. Our family is growing. My mom has cancer. When I was a little girl, I remember getting the stomach flu and my mom was there to tell me if she could take it away and have it for me, she would. Now I understand what she meant. I have begun our story at http://whenmymomgotcancer.blogspot.com/

Sent by http://whenmymomgotcancer.blogspot.com/ | 9:02 PM ET | 04-18-2007

Thanks, Leroy, for your insights. Yes, the cancer world is quite different from our "normal" world, whether the cancer world represents only a speed bump or an all consuming experience with both the disease and the side effects of the treatment. Whether or not the cancer world also provides opportunities for benefits that we have not previouisly experienced, such as new awareness of the sanctity of each day and a new appreciation for the love and compassion of others, the "normal" world is a better place to live, a place where we can focus on living our entire lives fully, not just contending with the beast.

Sent by Andy Halpern | 7:42 AM ET | 04-19-2007

Two years ago, I was diagnosed with breast cancer. The shock of it was unimaginable. That first night, after falling asleep I had a disturbing dream. There was a festive and merry party going on in a lovely house on a hill. Many people were walking arm in arm up a lighted walkway going to the party. I waned to attend as well. However, when I came to the door, the hosts wouldn't let me in. They gave no explanations; they just closed the door in my face. Desperate, I turned around, and noticed a large group of women, standing like ghosts, marked like lepers. We were "the others." I woke up in complete despair. I knew then that I would never be part of that carelessly merry and innocent party again. However, as time has passed, I have accepted my situation. Greater understanding, acceptance of others and peace have been my reword.

Sent by Liliana | 10:12 AM ET | 04-19-2007

Leroy and all,
I just want to share that my oncologist told me upfront that my treatmeant would be paliative and the cancer incurable. I am treating others differently as a result because I find that awareness of death continues to cause my heart and compassion to grow beyond my imagination. The joy I receive from others, both familiar and unknown, though their faces, kindnesses, music, and suffering is at times otherworldly. I don't want to sound like a nut, but it really is a wonderful world, even it contains death and suffering. Paz.

Sent by Carolyn T | 4:00 PM ET | 04-19-2007

I have never read this column having stumbled on it my accident. I am from Australia but loved what Leroy said about the others as it is so true.What I wanted to reply to was Carolyn's email. My oncologist told me similar news but as I told them that is statistics and I am not a statistic so I am not going to die just yet to fit into your gameplan. I am currently halfway through my chemo and it is very gruelling but scans have showed it has not grown contrary to what he originally told me it would only work in 50%of patients so I guess I am in the other 50%. I am continuing with the treatment as I wish to have quality time after this treatment has finished and hopefully it will be a long time before I have to face whatever will be my next challenge. This is my 2nd bout with cancer so I am not wearing rose coloured glasses but we must just stay focused and as the other emailers have said in here try and get your loved ones to bring you out of the cancer world into theirs. I love hearing normal problems for a change, takes the focus on my own.

Sent by Robyn | 7:58 PM ET | 04-19-2007

Leroy,
I'm a widow--my husband died 2 years ago (I can't believe it's been that long already) from lung cancer with brain mets. I just recently discovered your blog (from his oncologist), I wish I'd known about it sooner.

About your Cancer Nation. I think you also have to include, even if they're passing through, the people left behind, the caregivers, the lovers, the best friends that are changed forever too. They have visited Cancer Nation and have discovered all of the same emotions--the fear, the hope, the despair, the oddness from the rest of the world. I'll never look at anything in life the same way as I did before.

Thanks for being there.

Sent by Kathy Barney | 9:25 PM ET | 04-19-2007

Leroy,
I know that you all have moved on, but I just read this post and want to respond even though it may be read by nobody. My wife, Janie, was a wonderful example of living with cancer rather than dying to life while fighting it. She did not let it define her. Throughout her nearly 10 year resistance to breast cancer, she continued to be her loving, joyful self. She continued to teach through chemo, taking only the worst days off. She let the kids measure her hair as it regrew as a math and biology lesson. When she grew too disabled by bone mets to teach, she threw herself into knitting scarves for people and scrapbooking. She continued to go out with her friends and to do what she could with and for me. Our trips to Houston for treatment became our vacations. She never gave up. I am so proud of her. She died November 24 and I miss her terribly. Thank you for the forum to say this.

Sent by Ken Norton | 11:01 PM ET | 04-20-2007

To Ken,

I just wanted you to know that somebody did read your post. Your wife sounds like a truly wonderful person. Thank you for sharing your thoughts and feelings about her - I hope it helped you get a little peace.

Sent by Gretchen Hoag | 10:28 AM ET | 04-24-2007

to kathy, im a widow also, my husband passed with cancer 11 months ago. at the time of diagnosis, he was already at the palliative care stage, chemo did nothing at all, and radiation was for pain relief only, and i agree with your comment that the family left behind have to be included, i think we are also 'cancer victims' we live each day with the memories of the terrible ordeals our loved ones went through during the different stages of the disease. im not living with fear, but the heartache and sorrow of losing my husband and best friend is overwhelming. but i feel honoured to have been there to hold him in my arms as he passed away. my life has been changed forever.

Sent by judith lockwood | 11:01 AM ET | 05-01-2007