You've again articulated a feeling that I've had since I entered this world. I find a great deal of comfort and familiarity with my friends in the BCO chat room. We don't always talk about BC, but we all have the common bond of shared experience and the understanding that comes with that. We all know why someone gets anxious before the next scan, or how difficult it can be dealing with the loss of what we've always identified as the feminine aspects of ourselves... breasts, hair, and for many, their reproductive organs as well. Sometimes, not so often now that I'm better to a large extent, and working full time, but still sometimes I feel different in the "outside world" where those who haven't had cancer yet live. I'm just one of the gang in cancer world.

Sent by Nancy K. Clark | 10:46 AM ET | 03-09-2007

Leroy,

Your timing is always amazing to me. As I layed in bed last night after finishing what seemed like a very long day at the hospital, I am going to begin another leg of my journey next week with rads. Yesterday I went through sims, cat scans and tattoos — I was thinking how my life will never ever feel the same. I would not know how to go back to the way it was before!!!! It doesn't feel "unsettling" to me as I say it, I too have grown accustomed to this face of the beast!

Sent by Marianne Dalton | 11:01 AM ET | 03-09-2007

I have been a regular reader now for more than a year, hit a wall this week as the second type of Chemo has failed. My Dr. will re-evaluate options in a few weeks as to where we turn next. Thank you for your insights. They have been invaluable to me and my loved ones!

Sent by Stewart | 11:07 AM ET | 03-09-2007

Leroy, I could not agree more. But, even though we didn't ask to live in this world, and, we would refuse a free ticket to it, if offered, it is not all bad here, as you have so eloquently described.

There is wisdom here and kindness and forgiveness. There is competence and caring. There is fear here but there is also boundless courage. There are lots of friendly, humbled, fellow travelers. There are tears here but there is also humor and laughter and love. There is death here but there is also life.

Its not such a bad place after all.

Sent by Marilyn | 11:09 AM ET | 03-09-2007

My twin and I live on opposite ends of the US. We email constantly and talk at least 3 times a day. She has been my lifeline through this "ordeal." My life had changed in so many ways. When I was first diagnosed my family was amazed at my positive attitude. Eight months later... I am tired. I told her last night. I just want my old life back. I want to be able to just do the simple things again... water my flowers, mow my lawn, scrub and wax my kitchen floor. Chemo has left me swollen, bald, in pain and too tired to throw the ball for my dog.

Leroy, I'm not sure I like living on this side of the door. Conversations with other family members are always about the next chemo treatment, what pain meds I'm on, what did I get accomplished today. I want to talk about camping, taking pictures, reading books. It is true, we will never be the same, I just want some semblance of a normal existence again. I know in time the treatment will end and I will start to feel good again. It's spring on the West Coast and I want to feel the re-awakening and renewal that comes this time of year.

Sent by Patti | 11:11 AM ET | 03-09-2007

Though this will seem quite trivial, I think when you describe that your friends' lives are nothing like yours anymore, it is a bit like when all your friends are either married or have steady girlfriends and you are the only single one.

All of a sudden you don't feel quite at ease around them anymore, and start hanging out with them less and less and/or eventually find some other people who are in the same situation you are in.

Does not mean that you don't care about those other friends or that they don't care about you, but unless your circumstances equalize, you have different interests and preoccupations. Your priorities change and people are the least at ease around someone who has an illness. They don't know what they are or not allowed to ask or talk about, what can they possibly say to make you feel better. And I also think that a lot of it is that they feel sorry for your situation and a bit guilty about being healthy and worrying.

Best for you and my prayers are with you all.

Sent by David Abad | 11:13 AM ET | 03-09-2007

I often tell people that once you have been diagnosed with cancer, you spend the rest of your life looking over your shoulder. I am cancer-free now, after my second round of chemo and radiation. The first one finished in 2002, and we found the met in 2006. I did hear from two different people about friends/relatives who have been cancer free for more than five years after being treated two or four times. My instructions to my oncologist haven't changed, and won't change for a while: "Shoot the big guns." I want to play with my grandchildren, and my sons are 17 and 12 and have instructions not to be in a big hurry.

Sent by Ruth P. | 11:59 AM ET | 03-09-2007

Leroy,

I don't know if it will help or not, but every time something big happens, a persons life gets "redirected." Every experience, not just cancer, means you can't go back to the way it was before the experience. Marriage, children, death of parents, etc. change life forever.

Personally, I am learning with great difficulty to keep my eyes on the road ahead of me. Looking back or wishing for what once was or wanting someone else's life is a futile exercise...and a trap that robs you of the joy that can be in the present.

Before he died, one of that last things my husband said to me was "Never look back." Well, I did a lot of looking back before I "got it." Please, Leroy, take all the good you can take from what you have now.

Sent by Diana Kitch | 12:00 PM ET | 03-09-2007

Yes completely to Marilyn's second paragraph, huzzah to Leroy for framing the distinctive cancer journey world view so well, and in response to Patti's remark about wanting "to feel the re-awakening and renewal that comes this time of year," I remembered how during my chemo for Hodgkin's Disease, the treatments and recoveries created a NEW set of seasons for my body and life. Restful times, and the deliverance of blood transfusions when needed (Literally infusing me with color and vitality again), the two days/treatment cycle when the short course of prednisone so countered the chemo effects that I was able to dash about and clean and play and friends laughed and said "it's steroid time!"

Also the nights of tears, or ferocious writing, the still days on the sofa with my dog Zoe beside me, faithful through everything, just so grateful to be home with her and the art I love to gaze on and be nourished by... I wish for each of you verdant seasons and that you will somehow find unanticipated gifts among the rigors of your cancer journeys. My recent trip through thyroid cancer (secondary to the radiation that knocked out my Hodgkins) included going hypothyroid for several weeks. This very slowed town metabolic time, allowed me to cheerfully let go of the now-so-inessential "to do" list of chores. I had just enough energy to do something I'd longed to have time to do — send handwritten notes to loved ones. That, too, was a season I would not have enjoyed without the cancer journey. And 50 people I love heard all the things I wanted them to know about what they mean in my life.

Sending love and light to all who are part of this blog community.

Sent by Sarah | 12:05 PM ET | 03-09-2007

As some of you know, I am a caregiver survivor. If you have read this blog in the last 3 months, you'll notice a couple of my comments. My life, as well as a lot of yours, revolves or has revolved around cancer. Our experiences differ in the practicality (caregiver vs. victim), but both still deal with the same issues. i.e. mortality (for her: fighting for her life-me: dealing with losing her and helping her stay positive, even in the face of imminent doom). 6 months after her death, I am still in cancer world, and even though no one I am close to has cancer, I don't see me leaving anytime soon. I have no idea if I ever will. This whole experience from Melody's diagnosis to grave has forever impacted my life and my very perspective on life and its priorities.

In some ways I feel blessed and cursed all at the same time. In a way, Melody is lucky now because she doesn't have to deal with the constant fight to stay alive. She is now at peace without a care in the world (except for watching over me...which I am a handful). Her experience ended when she passed on. I am blessed because of what the experience taught Melody and I. She would always say..."Funny how a terminal illness changes your whole perspective on life." I am fortunate not to be terminally ill but still have the benefit of putting those lessons learned to practical use now thus getting more out of my life. At the same time, the curse of it is, that this will stick with me the rest of my life. Not one day goes by without thinking about cancer, or Melody, or the experiences that cancer has made us go through. Cancer is a permanent part of my life!

Sent by Michael | 2:52 PM ET | 03-09-2007

Hi Leroy— I haven't written for a while but read your blog everyday & get much comfort from it. Today's blog hit me because look back over the last ten months & see how much my life changed. I started out with lung cancer took the chemo for it was making some improvement then I started having trouble drooling & swallowing so they did an MRI I found brain tumors. I just finished five weeks of radiation & I never dreamed it would sap my energy so much all I want to do is rest, rest, rest. To be honest sometimes I would be feeling so weak & tired I would just wish I could go to sleep & not wake up. You hit the nail on the head no matter what the end result is this is where we live now. I wish you the best of luck & hope everything works out for you.

Sent by Dave Snipes | 3:40 PM ET | 03-09-2007

Before we had any idea that I had cancer, I had a routine test which showed "an area of concern." I had to have a follow-up test about a week later to determine what was going on. I was so incredibly stressed that week, waiting. The radiologist who performed the second test told me that, in her opinion, there was nothing and the first radiologist had mis-read the films. When I left her office, I felt like a giant weight (that I hadn't really realized was there) had been lifted from my shoulders and I had a wonderful and fun next few days. I felt like my old self, carefree and happy. That all changed with the actual results.

The overall effect of the cancer diagnosis has definitely changed my life in ways both good and bad. We've all discussed those aspects before. However, I guess that the weight is ever-present now and I am not as carefree as I used to be. I don't recognize that it is there, but it must be (?). There is no going back, and there are times that I long for those easier days. It's like a layer of an onion has been peeled away, a layer of innocence, and I'm living on a different level. I have gained huge insights into so many things, though, and that's been the silver lining. I know things that it's hard to know unless you have been faced with a life-threatening condition. And I share a strong and instant bond with others who have traveled a similar path.

Sent by Maggie | 4:30 PM ET | 03-09-2007

Dear Leroy and group, I was diagnosed with 4th stage lung cancer in Feb 06. I had chemo through July. My med team predicted an 8 to 10 month life expectancy. It has now been over 1 year and I am enjoying every extra day. I try to focus on the other world as much as possible. It lets me not think about our world all the time. The weekend is here, let's party in the other world for a couple of days! Well meet back here on Monday.

Sent by Ron | 5:08 PM ET | 03-09-2007

Hi,

I am a caregiver... my wife came down with brain cancer grade 4 and was given 3 mouths to a year to live. Then the Dr. said that's the bad news, the good news is the tumor is aggressive so fight it aggressively.

We are now 1 month past the 1 year mark. I found your blog a few months ago and I find much comfort in it.

I wanted to say that I found it strange when people asked me how I was doing. I wanted to shout out "how can you ask me that when all I care about is how to help my wife fight this". I understand better now, the one with cancer can feel very alone. So now I can relate because the caregiver can sometimes feel very alone and helpless.

Thank you for this column and continue the fight.

Sent by Chelsea | 5:12 PM ET | 03-09-2007

For Patti... find yourself a women's retreat to help rejuvenate your soul and your spirit. There are retreats for women with cancer nationwide! You will find a place of rest and a place to talk and bond with other women who want to "be normal", talk about books, music, and laugh, as well as find support in a fellow cancer traveler. Sounds like a retreat is just what will soothe your soul and spirit.

For Michael, I too am a personal caregiver survivor, caring for my father, as well as being a cancer professional". While I do not personally have cancer at this time in my life, I live my life on this side of the door. My friends have no idea why I would choose this career, and yet they have no idea of the love, respect and support I find with my Dads oncologists, nurses, hospice staff, or of the honor I feel being allowed to journey with my patients and their families as they try to navigate the good and bad days, the living and the dying. I am sorry for the loss of your love, Michael, and I am certain you are a better person being on Melody's journey with her. I wish you peace.

And for Leroy, thank you again, and yet again, for sharing so eloquently what most everyone in your blog "family" feels, as evidenced by their posts. I feel honored and humbled to be allowed on each of your journeys, as well. Thank you....

Sent by Karen | 5:23 PM ET | 03-09-2007

Dear Leroy,

What a journey you have been on! I too have traveled this unchartered trip, not planned journey. I come from a family of Cancer. My mother is a 14-year survivor of breast cancer Stage 3, my Dad oral cancer 25 years ago, and recently as I went through chemo he was diagnosed with lung cancer. They are young, my parents. I was diagnosed at age 46 in 2005 with stage 2a Breast cancer. I found it with self-exam, I had just had a mammo, sono and they hadn't picked it up. My parents and I share this interesting bond. I fear for my younger sister, my 20-year-old daughter and my niece. I live each day at work never feeling like I belong again. I wake up and watch the sun rise from my window, and look at the beautiful night sky with all its glory and am thankful I still am afforded this chance. I do worry about recurrence, but know many who do learn this and carry on. It's what we do, we carry on. We support each other in this War, we never turn a blind eye to a fellow patient because we know how precious life has become. I hope to leave some small mark on this world. Each day I work with Disabled children as I have for 25 years and I smile and am thankful to still enjoy their beautiful faces and how they have touched my life with their love and courage against the odds.

Sent by Marina Smith | 5:44 PM ET | 03-09-2007

Cancer does change your world, but if you are lucky enough to live through it and dance with "Ned" life has a way of creeping back towards the old normal at the same rate you adjust to the new normal. This, of course, works better for some than others, but the point is you don't have to spend the rest of your life looking at that door, go through the side one and on to the next adventure. I am sometimes surprised at how normal my post life can be. I'm not saying there weren't difficult points along the way or that everyone can find it the side door, but for those of us who have, life is more sweet than bittersweet. I hope you all reach it.

Sent by Chris | 11:45 AM ET | 03-13-2007

David said something that struck a chord within me: "I think when you describe that your friends lives are nothing like yours anymore, it is a bit like when all your friends are either married or have steady girlfriends and you are the only single one."

I think it may because we know a secret that people living so called "normal lives" either don't see or run away from seeing. Part of what opens up with a fatal disease is the greatest tragedy we could imagine. What may only come later is the greatest blessing anyone can find, to really be alive in this moment, cherishing friends and family, loving a walk through the park in the spring freshness. There is something that wakes us up to life knowing we will die. It is what most people don't see because they are on the run.

Maybe that is why it is so hard for them to be around us. Just being around us reminds them of their own mortality. It isn't easy to face it, but once one begins to face it, life becomes much more of a treasure than words can ever say.

Sent by Allan | 1:22 PM ET | 03-13-2007

Dear Friends,

I know exactly the feelings Leroy and many of you describe. However, the resilience of the human body, and of the mind never cease to amaze me. There were mornings when I stared at the fan in my rooms ceiling, just a few days after finishing my treatment, and I wondered if the world, my world, would ever be the same. It seemed like every day was an eternity, I had no energy to do anything, I was ready to give up school and the many projects I had put on hold while on treatment... yet in the distance, very far in the back of my mind, something told me that I needed to hold on, just one more day, just one more sunrise.

Today, barely four months after being in remission, I can't believe it is the same ceiling, and the same fan I stare at when I wake up every morning. But I must tell you, slowly, but surely, things begin to go back to "normal". Of course you can never see life through the same eyes as before, but the hair will grow back, the energy will slowly come back to you, the days in the hospital will sometimes feel strangely far away, and you will begin to enjoy the small things in life again.

I say this with a lot of respect and admiration for those of you who have endured treatments much longer and tougher than mine, but I do want you to know that although cancer may never leave you, there will be a turning point at which you'll learn to put the illness in "timeout", and enjoy the small trivial things of an everyday "normal" life, even if just for a few moments, or a few hours at a time. And it is those small victories that will give you the strength to keep fighting.

I don't need to tell any of you what it takes, because the fact that you are here, reading this blog, sharing your comments, shows that you're fighting the good fight. I send all of you my most sincere wishes for a full and speedy recovery. I'm proud of you.

Live Strong.

Sent by Juan Pablo Martinez | 1:35 PM ET | 03-13-2007

Leroy:

I am praying you are NED for a long, long time. I am almost 6 years out from breast cancer at age 38. It took at least 3 years for me not to think about the cancer when I woke up, throughout the day and when I went to sleep. I do not think about it every day any more. I have stepped back into the world, although it took a long time. I did not think it was possible. Certainly, my perspective is different, a new normal. It is "one day at a time" in my face, and that is OK with me. Cancer grew me up fast. Those of us who have lived in cancer world will always understand each other. It is OK to reach out and act as if everything is OK, when you do not really know. It is OK to do things and think about things you would not dare do when you knew those tumors were there. Go for it. Squeeze everything you can out of your life while you have it. Thank you for sharing your life.

Sent by Julie -- St. Thomas, Virgin Islands | 1:36 PM ET | 03-13-2007

Michael here again...

To Chelsea...

DUDE...I GOT THAT ALL THE TIME TOO!

I always replied the same as you as well (Doesn't matter how I feel...it only matters how she feels).

Melody would always ask me that question..."how are you doin'?" And one day she said to me, "You and I are going through the most difficult time we have ever faced in our lives. And even though we are going through the same thing but from different perspectives, it doesn't mean that your pain is any less painful than my pain. Me dealing with my mortality is just as difficult as you dealing with it. Just because it is happening to me doesn't mean that my pain is worse than your. Ours is equal".

You see, Chelsea, you have the right to feel that way. Your pain is just as bad as your wife's. We remain strong in front of them for their sake. One of you has to be a rock. But the cool thing is, only one has to be a rock. So you two can take turns.

Allow yourself to explore those feelings. Don't bury them, bring them up and deal with them...either personally, professionally, or get your little support group together. I had 3 people, all cancer survivors, all friends, that I was able to lean on. Sure, your family can help, but it is the cancer community that understands deeper than just well meaning friends. YOU ARE NOT ALONE. WE ARE HERE FOR YOU! If you want me email address, I'm sure Leroy here can arrange it somehow. BUT DUDE...GO TO A SUPPORT GROUP. Your wife's hospital should have a free support group. You will find solace and support. I wish I would have done that, but I still had my 3 friends, on call, 24/7/365 for 18 months. They were wonderful.

TO PATTI...

Peace to you too! I am a better person for knowing her and going down that road with her! She was truly an amazing woman!

My love to you all.

Sent by Michael | 1:39 PM ET | 03-13-2007

Leroy — I have been reading your column faithfully and occasionally responding but have to thank you again for what you write. I'm sure there are days where you would like to pretend everything is normal and not be reminded of your cancer. But doing a daily blog about cancer makes that a little harder. I am thankful for those moments where I can get caught up in something else and not think about it even during treatment it happens more frequently than someone who hasn't experienced cancer would think. We adapt to our new circumstances — the "new normal". I wouldn't wish it on anyone but it is not a bad life, either.

Sent by Marcia Greer | 1:42 PM ET | 03-13-2007

Dear Leroy,

I'm writing this from the ICU waiting area at Mayo Clinic. I'm a 3+yr colon cancer survivor, NED, here supporting my mom, and my vibrant loving caring dad — struggling to survive down the hall. He's braved aortic valve replacement at 84 - and then faces an MRI-revealed rare sarcoma that needs radiation/resection if he makes it. Like you, he's still very much in the game of manifesting compassion and benefiting others in his life. Were all pulling for him hour by hour — please keep him in your prayers — as we continue to keep you in our prayers (and isn't it GREAT that you've been here to pray for awhile now!)

As the Dalai Lama says — for benefit of others, keep going!

Thanks for all you do helping us in this challenging journey.

Yours —

Sent by Susan | 1:48 PM ET | 03-13-2007

I think you are wrong, survivors can leave the cancer world though it takes a very long time. Linda is now three years and eight months past her diagnosis and surgery for colon cancer. While for a long time we didn't know if she would survive and there is some risk still, we find ourselves more concerned about other things in our life. We now worry about job problems and paying bills and celebrate the recent birth of our new Grandaughter. Cancer at least for now is taking a backseat to the normal part of our life.

Sent by Robert Mardock | 1:50 PM ET | 03-13-2007

Leroy,

I realize that you have experienced a life-changing event in having had cancer — TWICE, no less!

Nevertheless, I hope that you will also be able to be thankful for, and ENJOY, your current, apparent, cancer-free state (at least after the 3rd Radio Ablation treatment). Please don't feel guilty because you are currently cancer-free. The Lord has blessed you. Be thankful for it, and enjoy it.

Sent by Greg Sheryl | 1:56 PM ET | 03-13-2007

To Stewart (3-09-07) — my church is praying for you and whatever "round 3" holds. Stay strong, were with you!

To Patti (3-09-07) My favorite book ever is titled "Going Alone" and it is a collection of short stories about women on solo adventures. Please check it out — I think it will make you smile and bring you much closer both to books and to the outdoor adventures you are missing.

Sincerely and with love —

Sent by Shawna | 2:01 PM ET | 03-13-2007

We all want our "old lives" back of course but the reality is that what we have is a "new normal". It is up to us to re-build our lives as best we can and adjust to this "new normal". P.S. I have been trying for 6 years and I still miss the vigor of my "old normal"!

Sent by Mary | 2:03 PM ET | 03-13-2007

My thanks to Leroy for bringing this "cancer world" community together. Even here there are striations though. While I've been reading this wonderful blog for months, I've never felt my experience worthy of a contribution. My story: At 50, after I found a breast lump last June, a lumpectomy/biopsy labeled the cancer stage 1 and a sentinel node biopsy found no spread. That's that, right? No. A follow-up chest X-ray showed a lung mass leading to removal of my right upper lobe. But again the cancer was stage 1, no spread. I've had radiation but no chemo. I have some impressive "cool" scars, but little on-going pain or life disruptions. Compared to so many of you who fight the good fight daily and struggle so mightily against the beast, I feel so lucky. I never felt the "why me?" that's supposed to be typical. I only felt lucky that both primary cancers had such early stage diagnoses. Lucky, lucky me!

But so many emotions are common for all of us. The grappling with my mortality that had never been quite so real before. The fearful anticipation as I await a 6 month follow-up PET/CT scan, is the Big C really gone? As Ruth P. said, "you spend the rest of your life looking over your shoulder." So I guess I am a full-fledged community member.

A couple of questions Id like to submit. I've been hearing about full body scans for a few years now and how the doctors discourage their use absent any symptoms so that unnecessary treatments are not encouraged. But wouldn't early diagnosis be worth it? Also, in talking to my radiation oncologist this week, a "there should be a study done..." moment came up. Perhaps its trivial but I always preferred sleeping on my right side and both my tumors were on my right side. The doctor commented this he hears this so often that there ought to be a study done about it. Who knows?

Thanks to everyone, especially Leroy, for sharing your individual stories. They are each priceless for me. Think Spring!

Sent by Sandy | 2:13 PM ET | 03-13-2007

"Your tumor markers are elevated . . " Yes, we live tentatively, always wondering if it will return. In the meantime, don't forget that live is an active verb — reach for the stars, whatever yours are. Each wonderful memory you create will provide immense comfort and strength if indeed, the next round comes.

Sent by Jeanne Roth | 2:50 PM ET | 03-13-2007

I have been a breast cancer survivor for 10 years. I have moved beyond thinking of it every second to not even every day. I don't even see the scars anymore. My only comment is that I have never liked the term "your cancer" or "my cancer". I have always corrected people when they used those terms and said, "it was never MY cancer... it moved in but there was no ownership...it moved into my body without my permission, I fought it, got rid of it, but it never was MINE". Just my thought.

Sent by Pam Swanson-Harrell | 3:00 PM ET | 03-13-2007

I am only a former caregiver, so I don't feel like I have full "cancer" status. Even so, this post really hit home for me, and it's been 7 years since my husband (then boyfriend) fought cancer.

At the time it seemed that we spoke a different language. I still had to work to pay our rent so in a way I lived in the "normal" world. But when my coworkers told me about movies, dinners out and bad dates, it felt exactly how you described — like they lived in a different world.

I was spending every night in the hospital with my boyfriend. My companions were nurses, medical assistants, hospital volunteers... Everything smelled sterile. Even when I left the hospital, I still smelled it. That smell sticks to your skin.

Thank you for writing so honestly about your experience. It means so much to me.

Sent by Tammy Carpowich | 6:06 PM ET | 03-14-2007

"This is where I live now," you write. I live there too not exactly in your world in my world, where I go in and out of "Cancerland," as I call it.

Cancer was (is) my teacher, my life changer, my constant reminder of mortality. For the past seven years, after the diagnosis of Stage IIIA Rectal Cancer (age 48) my life pivoted. Lost most of my colon, rectum found myself. Lost my significant other, found other a new life which includes activism with C-3 Coaltion, support with Colon Cancer Alliance a Masters degree in Holistic Health Studies and a new career as a holistic wellness educator/consultant.

All because of that entrance into Cancerland, a world that stays with me despite my NED status. It will never leave it may come back. Just like you, I will deal with it.

The culture of cancer intrigues me I am part of it. And I walk through both worlds with ease and confidence, now. Teaching comes in many ways.

You are also a teacher. I am with you and will continue reading and posting.

In healing —

Sent by Deborah | 5:39 PM ET | 03-19-2007