Beautifully said. You've hit on why I do what I can to help other women dealing, as I am, with breast cancer. When I was enduring the worst of times for me, with surgery after surgery, and all the rest, I found the bco.org chat room, and it became a lifeline for me. After life became less about doctor visits, surgeries, tests, etc I started going there for the comradship, and to help others dealing with the gamut of scary, uncomfortable,life-altering treatments that are part of BC world. Helping them helped me to feel more like myself again. Even when I was recovering from another big surgery, I was still able to be useful to others.I felt much more connected to the world at those times. I still do.

Sent by Nancy K. Clark | 7:13 AM ET | 06-26-2007

Leroy

All too often we isolate ourselves and create the aloneness.......

As most of you know, I was diagnosed in 1975 at the age of 20 (and was told I would not survive), and although I was not exactly alone (I was married 11 months and had family nearby)... there were no support groups and no one talked about the big "C" word... and so I in essence isolated myself and did not talk about it for 30 years....

Although I was "cured" then... I did not begin to "heal" until I finally began to talk about it and to connect with the amazing community many have now termed "cancer world"

I hope and pray that no one has to feel alone as I did, and with communities like you have created here Leroy, there is a place where we all can connect and be as one and know we are not alone!

Thank you Leroy for sharing your life and helping so many of us to find ourselves and to connect like no one outside of cancer world will ever understand....

http://www.canceradvocatescoalition.org

Sent by Ron Bye | 7:28 AM ET | 06-26-2007

Your way with words, and expressing these thoughts are amazing.

Sent by Krupali Tejura MD | 7:51 AM ET | 06-26-2007

Good morning Leroy/All

Thank you for this morning's blog. It says it all for me. We are all in this together, whether it be patient or spouse/caretaker. Since my husband got ill I always feel so lost and alone, as if the rest of the world is moving and I'm standing still. Most of my days are filled with sadness and fear and I know that only when I can overcome those feeling I can begin to live again. Reminding me that I am not alone brings solace to me and I thank you.

Be well Leroy and thank you for taking the time to write these heartwarming posts everyday. God bless you. Always in my prayers. Sasha

Sent by sasha | 8:05 AM ET | 06-26-2007

Last night when I was in the pool with a friend discussing the possibility of my upcoming surgery. She was on a kick of telling me that she (and others) want to hear the bad parts as well as the good ones. That is hard for me. I'm fine yelling about the frustrations of dealing with doctors and laughing about the things I have the nerve to say but when it comes to saying how I feel physically I'm not open.

Sandra thanks for sharing. I guess my delusional attempts are my way of not letting cancer control everything. I feel if there is anyway I can make an appearance after two or three weeks, even in pain, it will make me feel more in control.

Leroy, as always a topic for us to ponder today and in those midnight hours when we are alone with our thoughts.

Sent by Dona | 8:16 AM ET | 06-26-2007

Leroy - you are so right....what gets us all thru and helps us to be "the toughtest kid on the block" is "our gang".......the gang who understands your heartfelt words and thoughts and loves you for sharing them......
I've most recently been reaching out to a 78 year old uncle that is now undergoing chemo after my experience with breast cancer...it's hard to explain how it helps to share insights, tips or just commiserate about side effects, etc. with him....I know that I've brought him hope and encouraged him to keep going, keep moving, and keep living every moment - some how that adds so much to my life and cheats cancer. I guess because without the cancer I wouldn't have the experience to connect and communicate with him and others.....so, some how it makes me feel like I have totally cheated what the cancer has tried to rob me of and instead used it in many ways to enhance my life..........
I hold you and all our gang in my heart and prayers every day and just keep repeating my mantra for all of us.......All Shall Be Well.........

ps I hope playing in the garden was wonderful, Stephanie.....I understand what therapy that is.....on my way outside to water my lovely flowers...

Sent by Ruth Chermok | 8:24 AM ET | 06-26-2007

Leroy,
Thank you for putting into words the feelings and thoughts that many of us have but couldn't articulate. You are not alone, you are in my prayers and thoughts everyday and night. Everyone who writes in is in my prayers, the people I sat next to in the chemo room, the patients in radiation that shared their stories while waiting for their turn, the many women I met in the pink t-shirts at the Susan G. Komen walk. There are so many of us. I read the comments on your blog and am amazed at how many people have or have had cancer, how many kinds of cancer there are. I know science has come a long way and yet we have so much further to go.In my worst moments during treatment I had thoughts like, okay, this is what it must feel like to want it all to end, and yet you find something inside that keeps you going. Whatever it is you want to call it - determination or will, it pulls you through. We are all stronger than we could ever know. So, at your darkest moments, know that we are all there for you and will continue to be.

Sent by Lianne | 8:46 AM ET | 06-26-2007

today's blog is truly a gift...thank you for reminding me of what is really important.

Sent by Karen | 8:47 AM ET | 06-26-2007

Leroy,
Thank you again for putting it together for us this morning. "Moments that cancer can't have"-- How right you are!And there are many moments when I look. You, Kay and all of the other "family" members in this journey help by making it less about just me, less about just us. I take you daily with me into our struggles, into our home, where now cancer lives too. We do see the joy. But we have to remeind ourselves to keep looking. Thanks again for sharing your gift of -writing-- with us.
ps--Best of luck Jill..

Sent by Deb | 8:48 AM ET | 06-26-2007

Well said, Leroy. I feel like all of us who are survivors or touched by cancer (never was a fan of that expression but it fits) are on the "special teams unit." Together we formulate a plan to beat the evil opponent. We give gestures, like the ole' pat on the but, quietly saying, "You can do this, We can do this." And, then, when one of us falls or is tackled, we reach out our hand and again, unspoken words, "Brush it off for now, try to get up~~ you are not alone, we are a team who needs to do this together." Notice the difference in the words a coach would use, and the gentle words of all of you captains out there. There are words to encourage, words to guide that are softer and make it a little easier to "get up" after the fall.

I remember an example of a good CT scan I received when I and the docs were not expecting good news. I felt guilty to share my news with other survivors for fear of beating down their spirit in the event their news about test results, disease advancement, treatment, and/or prognosis was not so good. It's good to have empathy.
The old adage rings true, 'Walk a mile in my shoes.' I say, when we are traveling down that dark path, and it can be frightening, 'Take my hand or walk with me,' and the path with the burden of fear is somewhat lessened. It has been easier for me when I don't feel as though I am traveling alone.

So, thank you, Leroy, and all of you who bring inspiration and understanding to this blog. Please continue to walk with me and I will walk with you, with that unspoken understanding.......

Sent by Lisa | 8:49 AM ET | 06-26-2007

Dear Leroy,
It seems like you are reading my mind. Last night, couldn't sleep, running through my head was "no one really gets this". My friends care, my family cares, my therapist and doctors care, and that means the world to me, but they are not inside my body, feeling what I'm feeling, and freaking out.

As I read your blog today, and the posts of other people, I am reminded that there are people out here who actually do "get it".

You get it. Your blog today also reminds me that I am not my disease. Far too often, I fall into the pit of thinking my disease is me.

Quite simply, I think you are a wonderful human being.

I really appreciate the miracle you've created and allowed others and myself to participate in: this blog.

I hope you have moments (many and long)today of connection and ease, both physically, emotionally, and spiritually.

Heartlight and thank you,
Kim Blankenship

Sent by Kim Blankenship | 8:58 AM ET | 06-26-2007

Hi Leroy and All

Thanks immeasurably for this, Leroy. It reminds us not only that we do not have to be alone in our own challenges, but that we share unconditionally in those that face others confronted with the process of suffering and death throughout the world.

However ??? it does not go without saying that we are ??? it needs to be said ??? repeatedly.

Among the ways that cancer and other potentially deadly diseases eat at us is by eating up our time, concern and attention. Some of this is unavoidable. But we can reduce it.

And we in cancer and related worlds have something special, I think to offer in the struggle against the other ills and misdeeds that affect so many.

In knowing that we may die, we get and can give new strength to live ??? both to those with similar diseases and others whose lives and ways of life are threatened around the world. This is just one of the ways we are the toughest kids on the block. Our situations and theirs are similar, because we are both threatened and directly challenged by things that others dread down to their toe-tips.

But we live there as do HIV/AIDS orphans, Darfur refugees, American soldiers and Iraqis and all the other members of the worlds dismal litany of suffering ??? much of it unnecessary. We share that suffering to greater or lesser degrees whether we like or deserve it (we don???t) or not.

We are also fortunate ??? not in having cancer, but, for the most part in having communities that support us and in have the time, energy and community to share and do something about our concerns for each other and others. Those with more may feel moved to carry the ball for those with less of these precious assets.

I hope so.

So it doesn???t go without saying. We need to say it again and again. Why? Because we are in unconditional community with other who suffer and overcome their suffering ???

And because we are the only people who can.

Thanks for listening.

John Shippee
Atlanta, Georgia

Sent by John Shippee | 9:00 AM ET | 06-26-2007

Leroy,

Your blog was timely today. I've been getting very frustrated with my inability to eat, anything as nothing tastes good to me any more. The doctors keep telling me that this will self correct, well I'm getting a little impatient and as you described in your post am as tired as I've ever been if not more so and no amount of naps or rest seems to help. This eating thing is really getting to me but I can't let my kids know it because I saw how scared they were when they saw me in the hospital ICU so I keep it to myself. I'm sorry for rambling here but I just needed to get this off my chest a little. Thanks for your post and I'm praying for you and your doctors.

Sent by Tom DuBois | 9:45 AM ET | 06-26-2007

Leroy, again thank you for your blog. Since my son's diagnosis the 3 of us, my husband, myself and my son have been a "pod". He lives with us (he's 25) because he is unable to work due to the beast. We all go to ever appointment together, every surgery together etc. No one knows how it feels to go through this but us. This is how our heart feels. But we do know in our heads everyone has a story. Everyone is touched by cancer somehow and they too are going through what we are going through. And the main thing for my husband and I to remember is that it is our son who is truly "living" with cancer. Not us. So your blog hits home once again. We read it to him daily as it is not only an opportunity for us to be together , but also for him to hear he is not alone. His roller coaster has been making some sharp curves the last couple of weeks so his spirits have been down, but this morning he woke up and was ticked off at the cancer limiting him from the things he wanted to do. Nothing substantial. Just little things that we healthy people take for granted. So I kissed on his shaven head and said welcome back my fiesty boy. This was one of his "moments" that cancer couldn't touch. His fighting spirit. Praise the Lord!

I also wanted to thank the Steven that wrote in about curcumin. Our son asked the naturalpath yesteday at Cancer Treatment Center about this and was given a good report on the positive effects of this supplement. Especially since one of his chemos is Xeloda. So high five to Steven for giving us something new to hang hope on.

Leroy, you are a God send and keep up the good work. We need you.

Sincerely,

Judy Voller

Sent by Judy | 10:07 AM ET | 06-26-2007

Here's another example of a moment that cancer TAKES...

I have to get a letter from my Mother's Doctor stating that she has cancer. Apparently, me telling [unnamed government office] is not enough. As if someone would lie about this? Now I have to *prove* that she has ovarian cancer???

More time wasted because of this disease.

Sent by Elizabeth from Brooklyn | 10:12 AM ET | 06-26-2007

That was so beautiful and well-written, Leroy. You are right that the moments during which we connect with each other, feel compassion for the pain of others, realize we are not alone in our own struggles, those are moments cancer cannot ever touch. Those are moments death can't touch. I think those are the moments we are here for.

Sent by N.R. | 10:33 AM ET | 06-26-2007

Amen and again I say Amen! Leroy,thank you...let us always reach out while today is still today and encourage one another...God's promice is that He will never leave us or forsake us...

Sent by Sandy | 10:41 AM ET | 06-26-2007

Leroy

How timely this is for me. I officially began my treatment yesterday; I am now taking a shorter-acting pill in prep for radioactive iodine treatment. I will be coming completely off meds in about a month...I'm nervous and don't really know what to expect as far as how I'll feel. This is my first treatment and I've had to wait about 5 months for it...which makes me anxious. I just want to get it over with.

First, I want to thank you for yesterday's post. Everyone around me has told me how "tough" I have been thru this ordeal...I ask myself, "what's the other option"? I have merely done what I think anyone else would do (what all of you have done) and have tried to stay positive and not "break down". And although it's been hard, I realize today that I still have alot more fight left in me!

As for today's post...beautiful. Of course, I still have BAD days. Days when I'm so tired, physically and mentally. And on those days, I want to reach out to my family/friends, but they really just don't get it, even though I know they try so hard. It is on those days that I am glued to this site...hoping to find some comforting words and I fortunately, I always do!

I'll keep you all in my prayers!

With love!!!

Sent by Tess from KY | 10:47 AM ET | 06-26-2007

Hi Leroy,
Hope your doing well this morning. (Or as well as you can be...) I just want to thank you again for keeping this blog, I'm sure there must be days when you don't feel like talking about cancer... and just want to escape, but you keep it going and I for one want to let you know how much I truly appreciate it. Your words are so perfect... you always say something that lifts my spirits and I can say "I'm not alone".

I also want to say thank you to everyone else in the " blog family". Thank you for writing your comments. I always read every one and know that all of you are in my thoughts and prayers. Although its sad that we all have something in common to talk about, its also a good feeling to know you are there.

Leroy, have you ever thought of writing a book? I for sure would be one of the 1st to buy it!
(Or even compile all your blogs into a book with added comments from your blog family.)
Just a though... anyway... you enjoy your day. :-) Shirl Dolitz

Sent by Shirley Dolitz | 10:51 AM ET | 06-26-2007

Leroy -- Have you ever read Martin Buber's "I and Thou" ? From a Jewish perspective, it speaks about those moments where you are simply connected to everything. It might be a lovely read for you.

Kindly,

Elaine

Sent by Elaine Barnes | 11:04 AM ET | 06-26-2007

Leroy,
Your entry today was most wonderful. My wife and I both have had our bouts with cancer, prostate, and ovarian. We are finding as time progresses that there is life with and beyond cancer. I am now 10 years free and my urologist cut me free from regular visits. My wife had her surgery and has been considered free for the past two years. What overjoys me is that I have gotten back to my pleasure of reading, and trying to keep up with our one year old puppy. My wife has resumed gardening and is together with me allowing ourselves the right to have non cancer controlled life.

Sent by Donald Schwartz | 11:06 AM ET | 06-26-2007

To Tom DuBois about taste buds not working. Our son takes 50 mg of zinc each day advised to him by his oncologist. It takes a while to build up in your system to help with taste of food, but our son is now saying that it is helping.

Just a thought.

Judy

Sent by Judy | 11:08 AM ET | 06-26-2007

Good morning Leroy. It's really about being connected. The illusion of self. We can't be comfortable while one person suffers because that person is us, and we are responsible. A disease cannot take away what we are, because we are not alone and we are more than the sum of our individual selves. Having company announce itself, however, is sometimes necessary.

Sent by Alycia Keating | 11:13 AM ET | 06-26-2007

Leroy, Thank you for expressing how dearly the heart warming gift of love in our lives pulls us through. When I am done feeling lonely or scared because I am single, I remember what beautiful friendships and cancer world comrads I have in my life. Serving and supporting others is the antidote for despair.

Sent by nancy | 11:23 AM ET | 06-26-2007

Every week or sometimes every day I send out a report on my husband with stage iv colon cancer. And my friends write back saying "How can I say anything is wrong when you are going through so much?"

Yes, I feel for people all over the world, but one problem does not have to be worse than another problem for us to take notice. A stage I cancer, a friend whose husband had a panic attack, is no better than my husband with stage iv or you with cancer.

You know the t-shirt, "All I learned from my dog?" Well, my dog is about to undergo major surgery for a torn dog knee. She won't be able to do a lot of stuff for the same six months that my husband undergoes chemo.

But she wags her tail. She pushes the ball with her nose, she hops to get a drink of water. She would rather play ball, I'm sure. But she still plays, in her own way.

Watching cancer, we have to learn to play, even if just a little. Otherwise, are we living?

Sent by Tommy McDonell | 11:25 AM ET | 06-26-2007

Leroy and all,
There are almost whole days when I don't even think about having cancer-- adaptation or denial? The thing that I find most striking is that nothing is predictable.. I don't even have metastatic breast cancer and thought that I was moving into my last treatment phase-radiation, but my onc told me that he wants me to enroll in a clinical trial for an additional year of treatment (Xeloda and Avastin) because my tumor had not shrunk as much as he had hoped during neo-adjuvant chemo... He says that I am at higher risk for recurrence.. when I have to make these kinds of decisions it is hard not to feel alone..another long round of illness to prevent illness? what kind of decision is it? I don't know if it is worth it.. For me, the chemo was the worst and although my onc reassures that I won't be as sick on the low dose of chemo--most people still get nauseous.. besides my doctors always underestimate the side effects...There are days that I don't want to make any more decisions and have it all go away..

Sent by Yvette | 11:32 AM ET | 06-26-2007

Thank you Leroy, You said that quite well.
Life does not stop with metastasized cancer. While life does takes on a urgency, having cancer teaches you to wait (for results of treatments, scans and tests). Life becomes different but it doesn't stop still. I know I can't procrastinate, planning of trips adventures or projects is immediate. If I feel okay then I say, "Let's go".

Sent by Susan M | 11:36 AM ET | 06-26-2007

"moments that cancer can not have"...some days, that's all there is, that knowledge/comfort that others share your burden, your moments. Such a beautifully written post today, thank you Mr. S. Love to all in cancer land from Sherri in Texas BC dx 4-06

Sent by Sherri Eggleston | 11:45 AM ET | 06-26-2007

Leroy,

WOW, you are a great writer!

I have always believed that giving and receiving were a kind of feedback loop and it was impossible to tell where one began and the other ended because each is both.

I am not (yet) a cancer patient, but I love this blog for its genuineness and compassion. I receive so much from it. Thank you.

Sent by Diana Kitch | 11:54 AM ET | 06-26-2007

Leroy, you are truly a gifted writer. Thank you so much for sharing your story with us. I have been fighting stage 4 gastric cancer since January. Many of your blogs really touch home. I have learned much from you and the other bloggers. I used to feel isolated but found many great resources via the Internet.

One great resource for me has been http://www.oncochat.org/ It offers an online chat for anyone that has been involved in fighting cancer. It has been a godsend to talk to others that have been through the things I am currently going through.

I was even encouraged enough to start my own blog. Once I found out how easy it was to set up there was no excuse not to do it. Blogging is a great way to share your experiences with others and keep friends and family updated too. Please feel free to check out my blog at:
http://kimilgastric4.blogspot.com

Keep fighting the good fight. You are an inspiration to us all. Take care and God Bless.

Sent by Kim Ellis | 1:22 PM ET | 06-26-2007

A warm hello to all,

I find it very hard to ask for help. I was overwhelmed in November 2005, my sister was critically ill, no insurance, trying to get supplies, save money, work, take care of her, watch dad, keep going, not eating, barely sleeping. It wasn't I couldn't ask for help, I didn't know what to ask for. I felt alone, yet, I wasn't really, I just had to ask. My life, my relationship with my wonderful beau, my ability to interact with anyone changed so very dramatically and not for the good. I realize now how much my sister's cancer took from her, and how much it took from me. I forgot how to play. I lost my inner child (I was always going to be Peter Pan and never grow up). My life was run by baby monitors, walkie talkies, calendars, and schedules.

I was talking with a physician I knew as a resident today and it occurred to me, there are days now, I don't think about my sister's health or needs, I view her more as "normal." I have life again, and I am trying to regain my "Peter Pan."

I will have my "moments that cancer can not have." I am very sorry my sister has been through what she has, the treatment, trach, PEG, financial issues, however, right now she is more independent, and more capable of taking care of herself. That is good.

We have our moments back, from the "beast."

Sent by Susan Chap | 1:33 PM ET | 06-26-2007

Well I got the news and its not good.
A new tumor in the lung and possibly a lymphnode involvement. Chemo on a weekly basis and that means a drive from New Mexico to Tucson every week. Family in Seattle. I feel very very alone. Thanks for your blog today.It really helped. I don't know how I am going to do this one, it seems insurmountable, this is my fifth recurrence since 2003 and I feel alone and incurable like a leper. I wish I could be more cheery today, thanks for reading, Best, Estelle

Sent by Estelle | 1:33 PM ET | 06-26-2007

Leroy -

I can't begin to tell you how you have touched me - and obviously so many others. Thank you for sharing your life with all of us. Please know that we're all fighting for you and with you.

Sent by Jana Miller | 1:54 PM ET | 06-26-2007

There is a plaque in the radiation waiting area where I received my treatments that reads "Fall down seven times, get up eight." Japanese Proverb. I think of that often, sometimes several times a day, when I am struggling with physical and emotional fatigue. It's hard to explain to my friends and family the tiredness that is just overwhelming even though I am "finished" with chemo and radiation. I saw four different doctors last week plus three days of therapy for lymphedema plus having an aspiration with its inherent baggage of worry. All while I am trying to have a normal life. "Fall down seven times, get up eight." Maybe it's stubbornness in a good way?

Glenda

Sent by glenda | 2:15 PM ET | 06-26-2007

Hello Leroy and All,

I can really relate to the lady who wonders if Leroy really feels like writing this blog every day. Lord knows you want to step away... as far as possible some days when you deal with cancer. Some days, when my Mother is having a good day, or has gotten a good report, I can almost block out the fact that she has cancer, and think stupid shallow thoughts and have that lightness of heart we all wish for. I guess that's alright, even good. We must survive, and it's a hard-fought battle sometimes, just to get a moment or a day of peace and "normalcy?" There are so many precious treasures we should never surrender to cancer. I always find I'm drawn back here, though, and humbled by reading these posts. Somehow, even though it slings me back into a sad, harsh reality, it also makes me a better person, more empathetic, more grateful, more aware, more enlightened. I never really forget any of you, when I slip away. You're always in my heart and prayers. Much love and comfort to everyone.

Connie E.

Sent by Connie E. | 2:15 PM ET | 06-26-2007

Leroy,
I just wanted to say that I thought the special you did with Ted Koppel was great. It is difficult to convey the subtlties (sp) of cancer to caregivers and civilians. I thought you did a wonderful job. Though we may not say much, we are constantly thinking, constantly wondering and trying to figure out what is the next step, let alone the next BEST step. The fatigue from treatment is one thing; the fatigue of trying to remain strong and worrying about those around you sometimes has a greater impact. I had mucoepidermoid carcinoma, and fortunately, I am almost one year out and so far so good. I just had my first CT/PET scan after treatment and am awaiting results. Enough of me for now and on to you.
There is a new treatment here in Detroit, called the "laser scapel" or "laser knife" designed for the removal of cancer in problematic areas. have you heard of this or researched this? If this sounds of interest to you, let me know, I'll try to get more specific info on it for you.
Stay safe, stay strong,
Lance Carlson

Sent by Lance Carlson | 2:16 PM ET | 06-26-2007

Leroy,

Thank you so much for this blog, for takeing the prescious time and energy it must take. It really touches so many. I am so impressed by the many people who write in. There struggles, sharring good and bad times.

Sasha, I too have a husband with Lung Cancer,stage IV. No further treatment planned. It can be very lonely. I read this blog everyday and am so impressed by the many that just keep working away at this terrible disease and keep upbeat while doing so. I will always remember the day I took my husband to Chemo and another little lady was checking in. She stepped up to the counter and said "I am here to be poisened again, and then laughed." She had all within hearing laughing with her. I am sure was a hard day for her but her humor kept everyone up, a little lighter.

My prayers are with all of you fighting this battle, and with those who are struggling with other issues.

Thanks again Leroy for being there.

Dorothy

Sent by dorothy | 2:46 PM ET | 06-26-2007

I wish I had known about this blog when I was going through the chemo, doctor visits, etc. over 2 years ago....but it still rings true even now...AMAZING! Thanks to Tommy for talking about his dog - we learn as much from them as anyone - they are totally dependent upon us for their entire well being (and they love us no matter how we're feeling). It seems that most people that comment in the blog are of a religious sort - maybe that's to be expected, but I consider myself spiritual (not religious) and that works just as well for me.

Again, thank you for the time you put into your blog,

Sent by Tammy | 2:58 PM ET | 06-26-2007

Estelle

If you feel like it and will free up your e mail address and have a computer at your disposal, any of us who would like to can chat with you while you are in Tucson. I don't mind starting: didedoodah@aol.com.

Sent by Diana Kitch | 3:10 PM ET | 06-26-2007

Dear Dorothy, thank you for your post. My thoughts and prayers ae with you. Sasha

Sent by sasha | 3:40 PM ET | 06-26-2007

I've said it in previous posts: To me, being alone is OK. I quite enjoy my company most of the time.

It's being lonely that's the bigger problem. I can do something about alone by picking up the phone or taking a short trip to visit friends or going to my office.

To me, alone is physical. Lonely is the emotional darkness and spiritual pain when you realize and understand that although you're surrounded by family and friends, none of them can ever really get it unless they've been there.

I've been alone a few times since losing Terry in February. I've been lonely constantly.

Sent by Bruce | 4:34 PM ET | 06-26-2007

This being alone in the cancer experience has it's own lesson. It is a teaching and a dance of self-knowledge, utter humility and strength while continuing on day after day and being the best person one can be.Would I have reached such a tender respect and appreciation for all of us in this world without living with cancer?

Sent by Ellen | 6:17 PM ET | 06-26-2007

I just finished reading the post sent by Bruce. I know exactly what he means. There is a big difference in being "Alone" or "Lonely" My biggest fear is the emotional pain when the end comes. How do you watch the one you love suffer and how are you able to let go? I pray for courage and strength for all.

Bruce........my prayers and thoughts are with you.

Sent by sasha | 6:40 PM ET | 06-26-2007

Estelle - I am sorry your news was bad. And bad news is harder when you are alone. Please know that we will always be "with" you during your treatments or any time you need us to be. I know that when I had surgery recently, it meant the world to me to have the people from this blog along for the ride. You can do this.

Sent by Gretchen Hoag | 6:58 PM ET | 06-26-2007

Dear Mr. Sievers,
I want to thank you so much for your blogs. You have such a great way with words and expressing your feelings. I wish sometimes that I could be able to do that. It really means so much to see how you are helping others, as you are going through all this yourself. I pray for you every night along with so many others.
The reason I have decided to write you is because my husband also has colon cancer. He found out last year and has been fighting this for a year and a half. It was already stage 4 when we found out. He was only 45 years old, and at the time he had 2 tumors on his liver. He had the tumor removed from his colon back in November and was told by the surgeon that in a couple months she would be able to go back in and remove
one tumor and microwave (RFA) the other. We were told two months ago that it would not be possible. The doctor had him see an interventional radiologist who suggested chemoembolization. He went off all his chemo and avastin for a month to get ready for it and three days before it was to take place we were told that the insurance company denied it. They said it was not a medical necessity. He had his petscan done and it is still just in his liver but there are 2 more small ones now.
I am so upset how can the insurance company dictate what is a necessity? I was wondering if you have ever thought about doing some kind of special on this part of treatment? It is so hard to stay positive and keep fighting when you have this to face along with the fear of the treatment not working. We are most likely going to pay for it ourselves and feel lucky that we can. But it just isn???t fair. What about all those poor souls who can???t and need the insurance company to help?
Sometimes I???m not sure about his doctors either, I told him we should go and get a second opinion. That is my second question I know you go to John Hopkins and was wondering if there is anyone there that you can suggest? I am so scared and want to stay strong but sometimes it is so hard. I get so upset and I really don???t want to upset my husband.
I know you have so much on your plate now yourself but I was wondering if there is anyway you can help by getting the word out about the way cancer patients have to worry about insurance companies along with fighting this monster (CANCER)? Maybe Ted Koppel could do another special on this part of the fight, and if you can give us the name of someone for a 2nd opinion.
Thanks again for all you do to make others feel better. You do have a gift with your writing.
Best Regards,
Aurella Rocchi
arocchi@comcast.net

Sent by Aurella Rocchi | 7:23 PM ET | 06-26-2007

Dear Leroy, Your message today is especially heart-warming for me. I've had to struggle with insurance and drug company personnel all day while working my usual schedule and I sometimes felt quite alone--and then I came home to your post and felt cheered and connected--so thank you. And just a word about being tough: I agree that cancer brings out an inner toughness in all of us. But unlike you I never considered myself to be the slightest bit physically strong. My one brief experience camping out cured me for all eternity. I'm a manicure and facial kind of girl. But I'm tougher than I thought. Despite 17 months of continuous chemotherapy cocktails of varying intensity and composition (following extensive abdominal surgery) I've been at work every day at 6 a.m., home at 5 p.m. It's not a morality kind of thing. It's my stand against cancer, my "you can't take this away from me too!" position. Sally

Sent by Sally Jenkins | 7:25 PM ET | 06-26-2007

Leroy,

I have been reading your daily post for a relatively short time--ever since you appeared on the Ted Koppel television special.

I am a cancer survivor also and I want you to know that you have ministered to me in ways I've not experienced. Your writing is so incredibly authentic and captures many of the emotions I find myself experiencing day to day.

You are a gift to this world...especially to those of us who share the struggle of cancer.

Thank you.

Terri

Sent by Terri | 9:08 PM ET | 06-26-2007

Bruce

I know next to nothing about you, but I know the physical loneliness of which you speak. I lived in that place a lot of my life. It isn't true that nobody can "get it." Some can. Almost nobody has not suffered loss. It is in the generic rather than in the specific that you have common ground with others. I hope you find some good ears that REALLY listen.

Sent by Diana Kitch | 9:21 PM ET | 06-26-2007

Hi Leroy,

Thank you so much for your wonderful blogs and the "Living With Cancer" television show you did with Ted Koppel. This has really helped me not feel alone. I remember thinking, that at last someone understand exactly how I am feeling. Sometimes I feel like my life has a bit too much drama and I want it to be boring for a while.

I was born and raised in England until the age of 18 when I came to the USA to attend college. Sixteen years later I am still here. In 1999, I was diagnosed with a clivus chordoma at the base of my skull. For years I had been having headaches but as a law student and new lawyer I was sure it was stress, sinus trouble, too much caffiene, etc. It wasn't until I finally realized my that I had black spots in my vision that I eventually saw a doctor. After, several doctors I had an MRI and my first surgery in 1999 (where the doctor said the tumor was the size of his fist). Then I had 3 months of grueling proton beam radiation in Boston. After that everything was fine for a while. I carried on with my job, had a beautiful baby girl (called Katie who is now 5 years old) and life was great. Then in 2003 I needed another surgery (like you say "a new ride with big twists and turns, the kind that make your stomach turnover").

Between now and then I have had 3 gamma knife radiation treatments and just yesterday found out I have another area about 3cm in length growing at the base of my skull that will require another craniotomy. I try and laugh about it to releave some of the stress - "Oh, it just a brain surgery! I know how to do those!! No big deal." Like you have said this is most peoples worst nightmare. All the horrible memories I have associated with my prior surgeries have come flooding back. I have to face those fears and accept that I may have similar experiences again. Anyway, thanks again for all your work. It has really helped by reading the depressing parts when I need a good cry and reading the funny parts when I need a laugh.

Take care from a friend also living in Cancer World.

Sent by Samantha | 9:41 PM ET | 06-26-2007

Hi, Leroy.
I've been following your blog, but not posting, since the television special with Ted Koppel aired. Your entry today blew me away - a moment of awe in the middle of an ordinary morning. So it wasn't so ordinary after all. I don't know if cancer makes us more open to moments like the ones you describe, but it seems that way to me. Thanks so much . You're in my thoughts and prayers.

Sent by Leslie Caplan | 9:59 PM ET | 06-26-2007

Leroy,
You have a wonderful wonderful gift with putting your thoughts into words on paper. We are not alone, tho late at night when we are lying in bed and we just can't seem to turn off our brains, we feel alone. So thank you for your gift of words and to all of you who blog right along side of me, thank you for reminding me I am not alone fighting the "beast". I've knocked it down three times, and pray it will stay down, but if it doesn't I'm game for another round.
Thanks for all you do!!! You are a true inspiration.
Cheryl
Florida

Sent by Cheryl | 10:02 PM ET | 06-26-2007

Estelle...we are all with you!! as we are with Stephanie and the rest of this mottly crew!!

Sent by Karen | 10:04 PM ET | 06-26-2007

Great comments, Leroy, about the sense of solidarity we all feel, here in Cancer World. Reminds me of a favorite quotation:

"Hope is like a road in the country; there was never a road, but when many people walk on it, the road comes into existence."

??? Lin Yutang

I find that to be one of those deceptively simple statements that, the more you think about it, reveals new layers of meaning.

Grace and peace.

Carl
"A Pastor's Cancer Diary"
http://www.cewilton.blogspot.com

Sent by Carl Wilton | 11:55 PM ET | 06-26-2007

After my diagnosis, almost everyone I ever knew got in touch with me. People I hadn't seen since grade school and high school traveled across country to visit me. My third grade teacher found me and told me she had kept one of my drawings under the glass on her desk for 30 years. People sent gifts, cards, even my teachers from grad school were amazing. It was all a shock and surprise. That is what they call the gifts of cancer. A lot of people write about the gift of cancer in their books, but I could never understand it before. I was never alone in my life, really... I may have thought I was because I thought these people forgot me. But they never did. It's an amazing gift that I didn't die in a car crash, I had the chance to visit and talk with all these people. I know I will die from the cancer, it is very advanced. But now I believe in afterlife more than ever. If my 3rd grade teacher could find me after 40 years, then we are all connected and always will be, somehow. I don't want to leave this earth but I know now that I will always be connected somehow, I just don't know how. Cancer has given me that faith in human beings. Human kindness is just unlimited, it seems. It was the most amazing lesson I ever learned.

Sent by Kevin | 12:17 AM ET | 06-27-2007

I am a avid reader of your blog and the comments posted from others. I lost my beloved husband 10 years ago to a rare form of cardiomyopathy and our only child has struggled with early onset bipolar disorder since his death. This past decade has been filled with gut-wrenching grief, loss, fear, uncertainty and stress beyond words. Previously, I would never had used the words "strong" or "brave" to describe myself and on many days, I feel the exact opposite. But surviving a sudden death, several suicide attempts by my dear daughter and numerous medical, financial and emotional crises make me believe in human resilience and holding on to hope. Your wisdom, insight, humor, warmth, candor, intelligence, emapthy and compassion transcend cancer and inspire, comfort and help me to put things into perspective. I was particulary moved by this recent entry--that regardless of our unique circumstances, we are all in this TOGETHER. As my late husband liked to tell this high school students, "life isn't fair, it isn't even partly cloudy." He would also implore them to "comfort the afflicted and afflict the comfortable"---and then add "and you guys are WAY too comfortable!" Thank you for comforting us and afflicting us just when we need it most. You are such an articulate writer and I so appreciate everything you've shared. You have made a difference in my life here in Waukesha, Wisconsin and I am eternally grateful. Keep on keeping on, Leroy. The world needs more people like you. ps My dream/fantasy is to have a cup of coffee and chat with you and Elizabeth Edwards. Both of you are my heroes!

Sent by Nancy | 2:35 AM ET | 06-27-2007

In follow-up to my previous post, here is a link to the commencement speech that Elizabeth Edwards gave to the graduates of Meredith College in May. Anyone who appreciates Leroy's writing would definitely appreciate her words and thoughts. http://www.meredith.edu/commencement/edwards-speech.doc

Sent by Nancy | 2:45 AM ET | 06-27-2007

Great post Leroy. Thank you for keeping this blog.

Sent by Scott Fertig | 3:44 AM ET | 06-27-2007

I have just read your last post, Leroy, and can help saying something here.I am 33 and my brother died of blood cancer when I was a teenager.Recently, I have been told that my eye sight is deteriotating a lot.How did I take that news?I felt exremely lonely, helpless, angry with the Divine, despondent.Over the time, I completely have forgotten about the doctor's warning and kept on living my life, trying not to miss every smile and every joy that come my way.I am single, do not have a lot of friends, but I keep on living and hanging on.Do we stand any chance but to keep on doing it?
My prayers are with you, dear Leroy,I now what it means feeling lonely.

Sent by Ivelina Stoyanova | 4:15 AM ET | 06-27-2007

Dear Leroy,

Thank you so much for putting into words what I cannot. And for your honesty.

I joined cancer world Thanksgiving week, 7 months ago. I was diagnosed with rectal cancer through a routine colonoscopy 2 weeks after turning 50.

I Have finished surgery, chemo and radiation for now, so far my prognosis is good. As I also have MS, I was really thrown because I thought I was predisastered.

Much to my suprise, this is turning out to feel like something of a gift. I don't think i would have the gratitude and appreciation for my life without it.Also, I have met so many fantastic people.

Sent by Joanne Bergamini | 7:20 AM ET | 06-27-2007

Hi Leroy,

It's amazing! I read your blog sometimes and its as if you (or other readers) are reaching into my brain. My 49 year old husband has high grade stage IV prostate cancer. It started as adenocarcinoma and we thought (based on PSA) that the little bugger was quietly respecting the beating we were delivering but then we found out - quite by chance - that the adeno had mutated to small of the prostate. Our Dr. immediately recommended we go to MD Anderson in Houston for a second opinion on our treatment plan. We did go and what an extraordinary place. Probably much like Sloan Kettering, John's Hopkins etc. On the day of our initial consult, the Dr found that my husband was in acute renal failure and admitted him. The tumor had grown significantly larger in a matter of two weeks and crushed the tubes from the kidney to the bladder. Now he has surgical tubing that empties the kidneys for him into bags on his legs. At any rate, my point here is this...We ARE all in this together. At MD Anderson you knew that the people you passed in the hallway and the people in the elevator were all fighting a battle. My husband and I live in FL and enjoy going to Walt Disney World and as we left MD Anderson - in tears - we realized that this place was Cancer World. It may not be the happiest place on Earth but it sure is the most sympathetic place on Earth! It also made me think about others who are worse off or better off and that the grief we experience is not just for our loved ones but for those around the world who are dealing with the same thing. I think alot about the day my husband was diagnosed and then REdiagnosed and then I think of the thousands or -gulp- millions of people who are getting those terrible words at a given moment and my heart breaks all over again - for them. Another thought that strikes me - especially as I read over this comment - is that I am constantly referring to his Dr. as "our" Dr. and his cancer as "our" cancer etc. He says he doesn't mind and I beleive him but I wonder, does that disrespect the fight that he is having on his own. I sorely hope that it is not. I just beleive that we are truly in this together-except that I dont have the "luxury" of making the decisions (what a terribly awkward phrase-who the heck wants that "luxury"?) but I think you get my point. I have input and to this point we agree but what happens when they differ? Ugh, maybe thats a different BLOG! :)

Thanks for staying in touch each day through this blog. It gives me peace to know that as I am fighting for everyone else, they in turn are fighting for us.

Have a great day!

Sent by Sarah Senter | 12:31 PM ET | 06-27-2007

Dear Leroy and Friends,
This is the first time I have been able to even read the posts in 2 days because I have been so physically and emotionally exhausted from this fight I could not even turn on the computer to read. How I wish I had been able to read this earlier, because most of my despair is from the lonliness I have felt because I do not have family support, my "friends" left long ago, and I have seriously been considering just giving in to this disease and letting it take me---whatever happens, happens. But this gives me hope, and I feel like I am not as alone as I was this morning or yesterday, the least lonely I have felt in a long time.
What a gift this has been to read, not that there are so many others in pain, but that I am not living this nightmare, singled out, as the ONLY PERSON IN THE WORLD who felt like this. I wrote to Diana three or four days ago that sometimes I have read this blog, and it seemed like it was all "hearts and flowers" and everyone was loved and supported, and getting the best medical care available, but for some reason God had chosen me to go this alone. I told her I had to turn off the computer at times and just cry some more, vowing never to return to read about the wonderful care I was not getting, and I could no longer bear to feel as if my search was futile, and that no one cared anyway, so why should I bother to read or to share on the board. But I have a lot to share, and I want to share it with you and everyone else, because of all I have learned, and perhaps someone can be spared some of the pain I have felt if I came back and opened up to all of you.
As you know, I have been left to wonder since last June if my cancer was resolved by my mastectomy, the last words from my surgeon being "Oops, I think I made a mistake and did not get all your cancer". Then after that, seeing another oncologist and other drs, being told they thought it had metasticized, but could not pin it down in test results, so I have been left in the "non-definitive" category for all this time, and that is a lonely place to be. I have searched for the proper healthcare, and have been shuffled from dr to dr, and it seems no one will take responsibility, will not even communicate with each other to compare notes, or to help me to find out why I feel worse every day, losing all the strength I have left to the task of trying to be my own advocate and get some help to find out what is going on.
Today is the first time I have KNOWN I am not going down this road alone, and it gives me strength to keep going one more day, and make a vow to myself not to leave this board and stop reading everyone's post every day to find hope, and perhaps I will have the strength now, and the will to share myself more, with honesty, how I truly feel on this long, lonely road we travel. Because for the first time since I can remember, I do not feel like I am suffering a case of terminal loneliness as well as CANCER. We need each other, and I need you much more than you could possibly know.

Love, Briana

Sent by briana | 11:17 PM ET | 06-27-2007

Briana,
Please do not despair. Yes, it would seem that at times, this blog seems....overly optimistic. We are all afriad to be the one who looks weak and afraid. I have to tell you, that I too face this challenge alone. My children ages 32 and 21 are away and I have no one else. I sometimes find myself thinking that giving up is alot easier than this monumentous fight...but what if? What if ..I give up and the next day I would have won the lotto? What if ...i quit and the cure for breast cancer is found in my back yard? I can't help but think that there are too many unanswerable questions for me to give up now. I can go this alone, but I wont as long as there are people posting here, people like you, to help me thru..what if you weren't there for me?

Sent by Liz Zimmerman | 12:15 PM ET | 07-01-2007

"What happens to one of us, happens to all of us."

No truer saying than when your child is diagnosed with cancer. Our daughter was 3 years old when she was diagnosed. Yet, it was our whole family that was diagnosed, in a very real way. Days and nights in the hospital (over 60 so far, not one planned), times when she was on "house arrest" due to neutropenia, days and days when her brother never even saw her....these are some of the things cancer families deal with when it's your toddler that has cancer.

It has been almost 2 years now since diagnosis and our daughter has only 5 months left on chemotherapy. She doesn't remember a time before cancer. She knows words like methotrexate and broviac and heparin.

Yet, there are many "moments that cancer cannot have". She just graduated from preschool, along with her class, proud and happy. She is looking forward to Kindergarten in the fall. She is beautiful and smart and our house is filled with giggles and fighting (between her and her brother) and those are sounds I treasure.

Sent by Marie Lappin | 8:23 PM ET | 07-04-2007