Leroy,
I agree with your statement ???You have to find a way to come to peace with it, or it really will ruin your life.??? I believe that is the only thing we can do. Not give in, not give up on life, but come to peace with life and death.
My husband and I had a good conversation yesterday. I have changed a lot in the two years since my breast cancer diagnosis. I am mellower; more open minded, easier going, less intense. I listen to my family and friends and try to see things from their perspective. I used to have such strong opinions and made sure everyone heard them. My husband said to me that he is worried that my illness has made me weaker. He thinks that I am so grateful to be alive that I am willing to agree with anyone and not stand up for my beliefs. I had to laugh that he was complaining and actually missed my old, very opinionated self. The fact is that I am stronger now. Although I have not given up on life, I have come to peace with it. I have nothing to prove, I accept myself the way I am. I am willing to hear everyone around me now. I explained this to my husband and I think he understood.

Sent by Liliana | 9:48 AM ET | 05-21-2007

Give it a seat in the back of the plane!

It's back there somewhere.. but you remain looking forward to what ever the future may hold no matter how long or short the ride may be!

It has kind of been following me around for 32 years now... who knows when or if it will move back into the pilots seat...

But in the meantime I am just enjoying the ride! :-)

Sent by Ronald K. Bye | 10:07 AM ET | 05-21-2007

I have been dancing with this question/dilemna since October when I had my recurrance. I put my life on hold and waited for the end to come. It didn't. And I had nothing to do. Well, the heck with that. Now I go ahead and make plans, but I don't buy the tickets until right before I am going to do something. I always have the reservation in my head of, "God and the disease willing." But I make the plans anyway. Who knows? The doctors could be wrong! They have been so far.

Sent by Stephanie Dornbrook | 10:11 AM ET | 05-21-2007

Hi Leroy-

First, thank you...this is my first time to write having only recently found you all. What a gift this site is. Anyway, I'm a 52-yr-old, 3 1/2 year primary liver cancer survivor, beating the odds and surprising my docs. Even though I never asked them the question of how long, they let me know the track record with this CA and told me it would be back sooner than later. Yes, it has recurred and I've had 4 major surgeries to date, but I'm currently well and strong. But, as for all of us, the "how long" question always seems to sit on my shoulder. My husband and I have 3 years until retirement, when we hope to settle back in the area of the country where our 3 grown children and 2 grandchildren live. We have lived 2,000 miles away from them for the past 8 years-- in these years since my diagnosis it has been very difficult to be so far away from my loved ones. So many times I've brought up the notion of bagging it and moving. That would mean quitting the jobs and losing very valuable years toward retirement/pensions. So, we remain here--not easy-- I get frustrated because I wish I had the reality (delusion?!)that my husband has of being certain of a long life to enjoy the "golden years." I never feel that luxury of knowing I'll be here in 3 years to join my kids and their families--I hope for it, and dream of it, but don't feel the same as my husband, of course. So, I try to be patient, see my family as often as I can, and live in the moment. I'm having some really good days now, and I won't let this disease rob me of 1 good day because of fears of the unknown, if I can help it. But, still....the "how long" question haunts me. Thanks again to you and everyone out there--you mean so much to me already.

Nancy in NJ

Sent by Nancy | 10:13 AM ET | 05-21-2007

Dear Leroy,
I never asked the question "How Long"?
However, I was told three years ago that I had six months at most. The oncologist that visited me after brain tumor surgery assumed that I would ask the question.My reaction to his sad eyes and his schedule for my life was one of anger. Since then I have stayed away from statistics and I have thought deeply about the value of TIME. I have come to the conclusion that it is a GIFT.
At 19 years of age my best friend's son was stopped in traffic on the turnpike when a truck slammed into the back of the car sending the car and Nick and a friend into flames. There was no TIME for these healthy young guys to get things in order, to say good by, to leave a legacy. Our community was crushed by this accident and the suddeness of it.
I have been given the gift of time and just like any other gift that I receive, I do not ask the price or where it came from or judge the size, I just accept graciously and value the sentiment. Somehow, somewhere, someone gave me a gift and I'll cherish it and try to use it wisely.
Since my diagnosis of brain cancer and my six month time limit imposed by the first oncologist, my daughter graduated from law school, and two beautiful grandbabies have been born. Next year one son will graduate from high school and the other from college. And with great optimism my husband and I are building our dream house. I move on to the future and I plan for the short term and long term.
I'm not naive enough to think this gift of time will last forever. No one's does. But the most important time is the present. I have been told that when there is an end to this earthly life in the near future we will instinctively know. We will know when our physical bodies have to give up. My friend's son, Nick, joined a church and became very religious six months before his accident. Another local boy put photos of his life into collages a few months before he died. We like to think that both boys had some kind of preparation for what was to happen.
Maybe those of us with cancer will know the time to start preparing for the end through insight and knowledge of our own strength and weakness. I know that I won't rely on the unsolicited numbers of an oncologist.

Thank You to Leroy and everyone that contributes to this blog. Everyday I look forward to a good read and shared experiences.

Sent by nancy lavelle | 10:20 AM ET | 05-21-2007

"Are we there yet?"

That got a belly laugh out of me!

Thanks Leroy :o)

Sent by Teri Thomas | 11:10 AM ET | 05-21-2007

Leroy~ you ended that so well. It made me laugh.

Sent by DiAnn | 11:25 AM ET | 05-21-2007

As I get older, and especially since I got cancer 5 years ago, I kind of look at my life like a big hour glass. I can see all the sand piled up in the bottom, but the top is painted black and it is impossible to see how much sand is left. All I know for sure is that there is less sand left today than yesterday. I can try to live my life in such a way that maybe I can earn a little more sand up there by taking care of myself. But other than that, none of us really knows how much time we have. There are a lot of people getting up today that have not a clue that it is their last day on earth. Thinking about it, I don't think I would want to know how much sand is left in there. It is important to just live each day to the extent possible. I don't think we can live every day like it is our last - for one thing we would burn ourselves out - but it is important to remember that life is finite and it is an incredible gift to have it while we do.

By the way, I am espeically celebrating today as it marks my official five year survivor anniversary as the doctors calucate it!

Sent by Art Ritter | 11:34 AM ET | 05-21-2007

Hi Leroy, my last post was at around 7oclock this morning, right before we went for my husbands post-chemo scan. He is being treated for pulmonary metastases from esophageal cancer. I have just received a phone call from the doctor with the results of the scan. He told me that the the tumors in his lungs are beginning to shrink, BUT, there is one tumor that has grown in size. This does not make sense to me, but I do remember you mentioning (on your living with cancer documentary) that something similar happend to you. You mentioned that sometimes the cancer breaks through the chemo the same way antibiotics stop working. Im not sure if i heard correctly. Is this what made you decide to go to Johns Hopkins for the Radiofrequency ablation? Im a little confused at this point in time. I have an appointment with the oncologist this Thursday and I would like to mention this procedure to him. I live in New York and this would be an easy trip for us. Thank you Leroy, and again, welcome back.

Sent by sasha | 11:35 AM ET | 05-21-2007

Hi Leroy,
This topic really resonates with me. I finally finished 17 months of treatment for Stage III breast cancer a couple of weeks ago, am feeling perfectly healthy and as far as I know (ha!) there's no cancer in my body. But suddenly, emotionally, I'm worse off than in a very long time. Everyone (including my husband) now seems to expect me to stop talking or thinking about cancer, to slip seamlessly back into my old life, yet I have this frantic feeling that this may be just a tiny window of time -- PRECIOUS time -- before it all comes roaring back, stronger than ever. So wasting time on mindless tv shows or silly bickering or gossip drives me crazy. However, I have a hard time figuring out what is the most meaningful way to spend limited time. I have to keep my job in order to have health insurance. And I also need to spend an hour or so every day trying to get fit, to regain strength lost during those months of chemo and radiation. That doesn't leave much time for trips to the South Seas! Volunteer jobs that can make a real impact on the lives of others are more appealing than travel,anyhow, or at least they seem more important. But which ones? And then, I feel the urge to create, to leave something behind. Is that a little creepy? So I jump from knitting to writing to photography, etc. I'm aware that all this frenetic activity is "over the top" but I don't want to sink into the dull, everyday routine that was life "Before Cancer."

You say it would be the same if we knew we had one year or 20 years, but I don't think so. If I knew I had 20 years, the sense of urgency I feel would surely dissipate. Once again, I'd live most days without the constant awareness of life's fragility. Would that be good or bad?

Sent by Doris | 12:04 PM ET | 05-21-2007

I've been thinking about this, too. In my inner monologue, I figure that since I'm now in remission from stage IIIC cancer, I've got about a 50/50 chance (optimistic/pessimistic?) that I'm looking at about a five year life span.

Naturally, I'd like to follow my aunt and grandmother and live to 95, but that doesn't seem likely. I've already well-exceeded my mother's life span, who died at 37 (yes, of course, it was cancer).

So I'm working on a five year plan -- I'm calling it my "what if they told you you had five years to live, what would you want to do with your life?" plan. Money, cars, and houses are not on the list. What I do want is to see my son get married, have a couple more grandkids, celebrate my 25th wedding anniversary in high style, take family vacations with my immediate family and have reunions with extended family. I want to see whales and archeological sites. I'd like to be so far north on a summer solstice that the sun would never set.

But speaking of sunset, I don't know how far to go with this list. Will I be well enough? Do I have enough time? Will I drain all financial resources with my grand plans and leave my survivors pennyless? Oh and maybe, just maybe, we might need a few cents to pay for medical expenses that aren't covered by my health insurance.

The good part of my five year plan is the process of analyzing and appreciating what is truly important to me.

Sent by jane | 12:08 PM ET | 05-21-2007

I agree, Leroy. Anyone touched by cancer, whether ill w. it or loving someone w. it, knows about coming to peace with "it"...I am 55 yrs old and realize I have been close to cancer since my teen years.My father died when I was 17 (mets w. pancreatic c.-he was 57), my mother survived early colon cancer 3 months later,a sister survived early uterine cancer next,my mom-in-law survived 2 mastectomies 12 yrs apart, another sister survived (8 yrs so far) stage 4 breast cancer, my eldest sister died of lung/bone/brain in 2005,her daughter (my niece) was next w. breast c; then me: dx w. breast C. last year (I am the 6th of a family of 9 to get cancer), then my niece's fiance dx prostrate c. while I was still in radiation earlier this year. In the middle of all this, my husband died at 50 w. complications of lung transplant for alpha 1 antitrypsin deficiency...by the way, our 2 daughters tested positive for the gene. Likely they will be fine, UNLESS they have kids w. another A1A positive partner...
When I was dx in 2006, I looked in vain for a local support group. They were only during daytime (I work 8-4) and did not operate during summer anyway. Of course, you know what happened next--I found this blog just as I was starting chemo!!! There is no better support system on the planet. No matter what stage your cancer is, no matter what statistics are presented to you, no matter what's happened to others w. same dx---each of us is different and death looms the same for all of us. Once cancer is in the picture, your life is never the same. (Unless there is an imminent bus-rampage attack!! Thanks loads to Brian B. for making me laugh out loud :)
I love the dialogues and connections being established here, I cry with heartache at some of the posts and cry w. relief at others. This is a beautiful miracle that is happening here.
Just one last word/kudo to my current husband who came w. me to dr. appts, tests, chemos & surgeries. In addition, during the worst of chemo (when you feel you can barely walk or eat or laugh)my husband drove me to work and took care of me there as long as I needed him. My 3 daughters took care of me during those times too; coming to chemo and dr. appts. Life is Good, like the t-shirt says, even in the worst of it.
Love to all, from Sherri in Texas

Sent by Sherri Eggleston | 12:23 PM ET | 05-21-2007

ACCEPTANCE !!!

You accept you have an illness or disability. You move forward down your path of life, and do whatever you are capable of. The MONSTER can walk with you, but cannot dominate you. Consider this YOUR Bonus ball in the Pinball Game of Life. ENJOY EVERY DAY.

Sent by Sam Means | 12:50 PM ET | 05-21-2007

Leroy, You are an amazing person! I loved your latest entry about not giving cancer the window seat. I am planning on returning to work June 1 after being off for 3 months recovering from surgery. The past three months have really been tough, especially eating. When I'm not eating I feel pretty good, but of course, we must eat. Eating presents a challenge since my stomach has been rewired so to speak, it hasn't gotten used to it's new role yet, it will take a lot more time to adjust. But, instead of dwelling on what I cannot eat etc., I tell myself that this is definitely better than the alternative, which was death. I've decided not to wear my wig. I debated this for a long time and came to the conclusion that it is going to be hard enough physically to go back but I think the real reason is that something inside toldtells me this is me, what am I trying to cover up. My hair has grown back to where it outlines my hairline, no length to speak of, but I feel like I have the courage to go without my wigs. My cancer was not a secret so what am I trying to hide. Thanks too goes to those on this blog for your comments regarding going wigless. This is the real me, take it or leave it, I've got better things to worry about than my looks. Welcome home Leroy, I'm so glad you had a wonderful time!
'

Sent by Ruth White | 12:53 PM ET | 05-21-2007

You are right about that clock of time that starts ticking when cancer is diagnosed. I think the best thing to do is to keep living, breathing, and trying your hardest to be happy without worrying about how much time is left. Like if you have ever ran on a treadmill, when you watch the clock that shows you how long you have been running, it makes you feel exhausted to see how long you've been going. Instead, try putting the towel over the clock and not worrying about time at all. It makes it easier to run farther.:)

Sent by Lisa | 1:04 PM ET | 05-21-2007

By the way, I think your documentary on Discovery was great. You, Mrs. Edwards, and Lance Armstrong are amazing people and represent so many afflicted with cancer.

Sent by Lisa | 1:14 PM ET | 05-21-2007

Leroy,

Glad you are back in the saddle, but sorry the idyll is over. From the sound of your blogs, you certainly showed cancer a good time!

Making peace with the inevitable seems like a no brainer, but is actually one of the hardest things to do. Many of us women don't like to get old, so we keep a bunch of plastic surgeons busy helping us fool the public. But eventually, the wrinkles win.

There is a tremendous life force in most of us that keeps us from harm/danger. Very often, when we are dying, that life force leaves us and we really don't mind going.

It's just that it is difficult to imagine that or wrap our minds around it while we are still happy being alive!

Sent by Diana Kitch | 1:16 PM ET | 05-21-2007

I was diagnosed with Inflammatory Breast Cancer last September. It is an extreemly agressive cancer with a very poor prognosis. I have had TAC, a very powerful chemo, a Modified radical mastectomy and 4 1/2 weeks of radiation twice daily. The dose was high and made some of my hair loss permanent.

Having been very healty most of my life and being clinically depressed added to the difficulty in dealing with my fears, particularly the fear of death.

A nurse who saw me frequently knew the difficulty I was having, and knew I was having trouble adopting a new attitude, but couldn't embrace one until she said the following: "You know, none of us have any guarantees about how long we will live or how we will die."

She said, "You are feeling good at the moment and need to embrace and enjoy every minute of that, and every second of life."

She said, "Make a list of the things you really want to do, and then start doing them. Plan some fun and have it."

She said, "You are going to live however long you are going to live and you have a choice to spend those days being miserable or enjoying the life you have."

"She said those who are in misery, don't seem to do quite as well."

Her words made a huge difference in my life and helped me to put fear in its proper place. Those words (and a boost in my antidepressant medication) have changed in my attitude and I am in a much happer place and am enjoying every minute of all of the good stuff I live around.

Sent by Norma Greer | 1:17 PM ET | 05-21-2007

I sometimes think that one of the reasons that illness gets so bad is that it's a way to get us to let go of life a bit more easily. We all know of or have seen people who were ill for a long time and who, when they died, were thought to have made a timely escape. I wish that it wasn't that way for anyone, but is the contrary any better...feeling well, or fairly so right up until the end and leaving with a feeling that it's too soon? I imagine that these questions have been pondered for about as long as people have not died off before they had reached what we now consider to be middle age. I think that a person is lucky who believes, as I do, that the end of our bodies isn't the end of us, or of our experiences. I can't imagine how much tougher it would be facing ones' own death, believing that death brings obliteration. THAT would be cruel.

Sent by Nancy K. Clark | 1:45 PM ET | 05-21-2007

I am SO there with you...as is usually the case.

Say those things you've been holding back. Go to those places you wanted to go.

There's never enough time.

I'm a survivor-caregiver and I can guarantee you there's not enough time in the world.

Sent by Bruce | 1:46 PM ET | 05-21-2007

O.K. Leroy.......this was one of the best blogs yet. I really enjoyed it

Sent by Lou Mayers | 1:49 PM ET | 05-21-2007

Oh Leroy~what a joy you are! And you hit the nail on the head every time. I have heard, "Don't worry about it" until I am blue in the face! How can a person not worry about cancer? On the subject; I haven't had the nerve to ask my doctor point blank, "how long?" I do know from research that I have an EXCELLENT 5 year survival prognosis...and this simply is not good enough. Call me selfish, but I have a newborn and 5 years is not enough time. I will fight this disease and I will fight it with fury. Perhaps it's because everyone (well not everyone) but I've heard numerous times that I've got a "good" cancer or if I could've chose to have cancer, thyroid cancer is the better of the evils. I HATE to hear this. I feel like so many people minimize my emotions and feelings when they say ignorant things like this. I want to say to them, "let your wife/daughter/mother get diagnosed with this cancer and then see how you feel about it." I want to tell those people that cancer is scary, no matter what type you have. Cancer has in some aspects destroyed the confidence I had in my body...it has ripped away a lot in my life. But it has made me a stronger person. I know in my heart that there is a reason for everything...a good friend from high school just told me the other day, "If God brings you to it, He'll bring you through it." I will bear this burden the best I can. I will have bad days, but hopefully for my sanity (and those around me) I will have even more good days. This site is my safe haven for me...a place I come home to...all of you are part of my growing family! And I feel so fortunate to be in such good company! As always...with love and prayers!!!

Sent by Tess from KY | 2:39 PM ET | 05-21-2007

I think for me I had 4 teenagers in the house when I was dxed..So that kept me in the land of the living. Of course I had my moments. But the diverson was great cause teenagers move forward constantly.
I also at one point couldn't work which really was upsetting but it was then I threw myself into my art and photography. That was very healing and productive as well for me.
I was worried about how long, , cause of the kids. So I made goals like lets get them all to graduate school and fairly able to fend for themselfs.Then it was college, weddings and whatever came next. Also making sure they were good people. And we are there. The blessing became the time I was given.
I never planned on going out silently so it became about making my mark on others and the world.
One thing I learned from others in my family and friends with cancer. Life every day as it should be lived and that is a blessing.
All the things that became the most important things are done daily. Nothing left unsaid to those we love.
How long? I don't think any of us know it. If I had a crystal ball not sure I would want to know. Besides I could walk outta here get hit by a truck and it be the end. The point is we just know it may happen sooner. So we have the oppertunities others do not have to take care of things.
Anyways about the window seat I love it ..Are we there yet, no way!!
Thanks Leroy,Once again you hit the nail on the head.
Have a great day everyone!:)

Sent by Kerry | 2:46 PM ET | 05-21-2007

I discovered your blog through the Discovery Channel show which I thoroughly enjoyed. I am 48 years old and was diagnosed with Multiple Myeloma last Sept. after being anemic for a year and not know why. I have today just started the chemo for a stem cell bone marrow transplant. Thursday will be Day 0 when they give me my stem cells back.

I am enjoying reading your blog and believe that you need to just live each day as it comes. I have experienced Cancer from all sides. My Mom died from Breast Cancer when I was 17. Almost exactly three years ago my husband passed away from Pancreatic Cancer and I was his caregiver. And now I am experiencing it from a patient side going through the tranplant process. And through each experience, I have realized that you need to live each day and always move forward to the next thing. I have two teenage sons and right now my focus is to get healthy and be around for a long time to share many things with them. I just keep my focus positive and forward moving.

Sent by Abby | 2:54 PM ET | 05-21-2007

Since receiving my ???news??? and enduring the drip, drip, drip of my first four rounds of chemo, nothing has touched my heart and life with such uplifting force as your wonderful blog and the brave and meaningful comments of this cancer ???family.???

I???m sure all of us laughed together at Brian???s ???rampaging buses.??? We may have cried together at Patiann???s sad, forlorn cry. We understand Susan???s meaning as we, too, walk through that ???gate.??? I???m sure many of us agreed with Amande???s beautiful, almost poetic words, ???I do not believe it is death we fear but that which happens along the final path to its door.??? Blog after blog, your thoughtful writings, Leroy, and fellow warrior???s comments light the way so beautifully for all of us.

But one blog keeps calling me back, with puzzlement and concern. That was May 15, 2007, titled, ???The Burdens We Can Bear.??? At issue was the common expression, ???We are given the burdens we can bear.??? You disagreed with John (a commenter) who thought this statement to be false, since many can not bear the burdens and are destroyed by them. Your response to John was based on a time-frame concept, that bearing the burdens for even a limited time is to win the ???fight.???

I think both you and John are right.

But my concern with this expression is its very obvious implication that there is a ???burden giver,??? an intelligence who dolls out burdens to each of us with regard to each person???s burden-bearing limitations. For those of us in this cancer family who believe in God, do we really believe that He dolled out this monster? Surely not. And for those of us who do not believe in God, this expression is both faulty and meaningless.

Maybe it is time for this old expression to say, ???My bad,??? and just go away.

Sent by Norm Shockley | 3:08 PM ET | 05-21-2007

Ruth,
Altho I always went bald at home, I, too was worried about going wigless at work. But once I had enough fuzz to indicate a hairline, I tried the look at work!!! and you know what? Everyone celebrated the look and told me how great I/my hair was! I guess they were so relieved to see me grow hair, eyebrows, healthy skin again--for them it was a symbol of getting well. Hang in there, girl! Love, Sherri in Texas

Sent by Sherri Eggleston | 3:09 PM ET | 05-21-2007

my father always used to say, "i'm not dying. i'm *alive* until i'm *dead*." perhaps he said it as much to remind himself as to inform his family, friends and neighbors. it made us all giggle, but we all respected the truth of the statement. i want to be just like him when i grow up.

Sent by mary | 3:26 PM ET | 05-21-2007

When my 11 year old son died of cancer the obit said " he fought a courageuos battle with life and won." Pray for peace.

Sent by Gail Vines and the spitit of Fletcher Christian Vines | 3:50 PM ET | 05-21-2007

Leroy:

You have a way with words, which makes me so happy...it's insightful, yet humorous.. it's truth with some sprinkles and a cherry on top.

Thank you...for making this post one of the highlights of my day.

Sent by Krupali Tejura MD | 4:09 PM ET | 05-21-2007

Leroy,

First, I wanted to let Joan McDade from Seattle (or any others interested) that there is an excellent support group here dedicated to lung cancer patients and caregivers. Might be best to contact me direct for more information: puffbus@comcast.net. Next meeting is this Thursday at 7PM.

Like many others, after this diagnosis, I asked, no pleaded, for the answer to "how long". When my oncologist quoted the statistics and the answer was essentially 6 months to a year, I was callous enough to start bargaining with him: "Could I have two years?" "Maybe" Could I have three?" "That's doubtful".I left that appointment, head spinning. My wife could find no words. Our trip home was in silence, as we contemplated this prognosis.

Later, I mentally fast forwarded to a time when good oncologists will have these answers. "Yes, according to our medical super-computer which does an analysis of all the various mutations and remedies, you will die at precisely 10:54 on Monday, May 21, 2007". Oh Boy, "Doc, I just wish you had kinda kept that to yourself for awhile".

Since that day, our lives have been filled with wonderful things. Last July, we took a trip to California. I drove our motor home every mile. We celebrated my wife's mom's 80th birthday We had a family reunion. I walked my precious daughter down the aisle. We leisurely drove the Pacific Coast again, finding peace, beauty and strength. We renewed our wedding vows and celebrated 39 years of marriage. We were there for the first meeting of the first lung cancer support group in Seattle. I walked in two Relay for Life events at Husky Stadium. I had the opportunity to look our Governor in the eye and ask her why our state (like most states) had squandered the lung cancer tobacco settlement money. Thankfully, we celebrated each new day, even when I was sick from chemo.

We have had the joy of meeting many other cancer patients. Some, I have walked the last few steps with and had the privilege of holding thier hand in the last moments. I celebrate their lives daily. They taught me that there is dignity in death. They answered for me the question we all ask, "What are those last weeks, days, hours going to look like for me?" That's what we really want the doc to tell us.

See, we live with a beast who is rapacious, but one we seldom get to know personally. He hides. He's the boogie-man under the bed. He scares us so much that we don't want to meet him. He sits quietly, right at the base of our neck, directing every waking moment, like a bad monkey. Only when we confront him, begin dialogue and tell him he can't scare us will he begin to be our friend. Our solution is instinctive and basic. Leroy, at the time you began this blog, you reached out to countless others. Now we form a mutual circle of affection and care. Thank You. We are not meant to go through life alone. Only by holding anothers' hand can we come to be friends with the beast.

So, this afternoon I will head out to do some volunteer work. I will answer phones for the afternoon with others like me. I hope that I will help someone, that when the phone rings, I will have the right words for them. But I really do it for myself, for the feeling that I did good today in some small measure. I have a secret. One the beast does not know. And my message for the beast, the monkey today, " You may kill me, but I'm going to take you with me".

Michael Lewis
Seattle

Sent by Michael Lewis | 4:13 PM ET | 05-21-2007

Welcome home, Leroy!!! Hope that you are refreshed at least a little. Thank you for your blogs from Hawaii. We cherished them and of course continue to look forward to each one yet to be scribed by you.

Your question, "How long" triggered a thought...
You have done so much for this band of kindred spirits: you ask the hard questions that are often unexpressed; you muse about your own feelings that are a reflection of ours; you have created and given us a place for support, care and comfort. It has occurred to me, Leroy, is there anything we (all of us)can do for you? You have helped so many, let us help you in any way we can. Ask and we shall respond!!

Blessings and prayers as always.

Sent by Al Cato | 4:14 PM ET | 05-21-2007

To Michael Lewis: How eloquent you are! That is a comforting thought, quieting the beast by holding each others' hands. It's true, you know. That's what it's all about, after all. Those connections. from Sherri in Texas

Sent by Sherri Eggleston | 4:39 PM ET | 05-21-2007

Interesting topic today. I'm trying to come to grips with the "when and if" of cancer myself. I know I'm more than fortunate to still have "if" as part of my mix. I'm petrified for all who are dealing with "when". I'm 9 mos out from diagnosis and my treatments have just reached a maintainence place. "When" is on the back burner for me. I'm thrilled but now that the stress and steel of treatment is over I find my mind free to really react to my cancer. Many of you seem to have found a way to live with knowledge of or acceleration of your expiration dates. I'm really scared about mine being pushed up. God, I know I'm not the only one dealing with this and I feel weak for being afraid. Here's some of a freewrite I did about it over the weekend. I hope it helps me and it might help someone else. Maybe you could let me know if I'm on a right track ... Future. Different. From stretching to forever, still plenty of time to this may be it. There???s like a void in front of me because of that. Scary to see my future with cancer knocking on my door again whenever it feels like it ??? or not. If it does it???s such a freakin' loud hard knock. I have to find the courage to live, fully live, within this threat and with these changes. I have to stop waiting for cancer to come back and believe, really believe that it???s not going to ??? not today. It???s hard to see the future one cancer-free day at a time. I want a bigger picture than that ??? and I guess that???s what I miss most of all.

Sent by Lorraine | 4:50 PM ET | 05-21-2007

Welcome back to the mainland Leroy,
I never asked about time, I'm a nurse I knew 2 things it wasn't supposed to happen to me and ovarian which I have has an average of 5 years. Then I did surgery and chemo and decided that I was getting to be the one having a long term remission. I am doing everything right. What I found out, is what you just wrote about, it never leaves us, it is always there, in the background. So here I am 2 years from diagnosis with 1st recurrence and 1st dose of chemo for it behind me. It is a chronic disease to me, now, and I will be taking it on vacation 5 days after my 3rd chemo round. I will follow Karen's advice and not give it window seat, however before I go I will check out the hospitals in the area and bring my medical records, cause cancer gets to be packed for. We never ask if we are there yet, cause the time in between is too precious.

Sent by Rita | 5:13 PM ET | 05-21-2007

How long? Yes, it was the first question I asked the oncologist as well. The answer brought the first tears to my eyes. I was thinking about my children and if I would be around to see my girl graduate from high school. No, I was thinking if I would be around to help her go through high school.. Be that as it is, the next thing I did was try to think of all the places I wanted to go before I died. But the reality of that is that I don't really like to travel! It's never been a big force in my life. OK, yeah, there are some places I wouldn't mind seeing and visiting. What I realized over time, is that I just want to live my normal, mundane, involved/busy life. Just like it was before metastatic cancer. I just want to go to high school productions, take my girl to horse lessons, drive my kids to and from school and generally around. I want to fix dinner, and go to school and work in my field. I don't need anything special. I just want my life.
How long is sort of on my mind all the time. Do I have to worry about the junk accumulating in the garage/attic/closets? Will that ever be MY problem? Do I have to worrythink about where to retire (in 10 or so years)? Will I be here for those things to become my concerns? When will my disease come out of NED? When will my treatment turn futile? Those are the things I worry about.

Sent by em | 5:22 PM ET | 05-21-2007

How long? Today I started a new job and I am really happy. I have to get a CAT scan and am really scared. What if it came back and I need chemo again, can I still do my job? Then I told myself that since God brought me what I asked for I have to trust I am going to continue to heal and not ask how long! I read about so many that were given a time and have outlived the prediction so I'm with you Leroy - WE ARE NOT THERE YET! Thank you again for telling it like it is.

Sent by Vicki (FL) | 5:37 PM ET | 05-21-2007

Leroy,

I agree with Al (above). What can we do for you - now and in the future? You have given the gift of yourself. How can we possibly return the favor?

Sent by Diana Kitch | 5:57 PM ET | 05-21-2007

I'm 26 years old and have been living with uterine/ovarian cancer now for 3 years. I remember when I was first dx'd I just wanted to know when I was going to die. I didn't care about anything else. It was a strange feeling, always having been an adventurous, LOVE LIFE, kind of girl. At that point though, I just wanted to know when.

So far I've been here for 2 years longer than anyone (drs) thought. I've been married, been to Hawaii, about to buy my first house and finally be able to have my own little puppy. My life has never stopped. I thought when I was dx'd life would stop that day. It has gone on with STYLE, and I am so proud to say that every day is a day I am so happy to enjoy. I may only be able to make a salad, or lay on the couch and listen to my cat purr, but sheesh! I am here and I am breathing and every breath has the sweet essence of the love this life has given me.

I hope that I can continue on my journey of life because there is so much left for me. 26! SUCH A BABY! I remember when 26 seemed OLD to me. I am so happy to see the sun, to hear the annoying crickets in the morning...to be able to finally drink my iced tea, my favorite iced tea in my backyard with no tubes, no pills, and the sun freckling my face.

You all have no idea what silent support you have been for me. I will think of you and wish you sun and freckles...and sweet iced tea with a little umbrella.

Cancer will probably take my life from me. And it is hard for me to say "but look what cancer has brought me"....I just know that I will live until I know it is time to go. I will live until my feet burn. I will live the life that I have always dreamed of. Cancer or not.

Sent by Laurie | 6:36 PM ET | 05-21-2007

Dear Mr. Cato, I loved your post regarding Leroy, no one could have said it better. He is our " Mother Theresa " God bless you and your family Leroy, God Bless us all.

Sent by sasha | 6:56 PM ET | 05-21-2007

Dear Leroy,
I hope that your time in Hawaii will be a part of each day and give you joy! Today's blog has definitely made me reconsider my ever wanting to "channel" Scarlett O'Hara...."I'll think about that tomorrow." Yes, my life has been changed but I find myself not wanting to "wait until tomorrow" to plan for the things I want to experience. Loving life and the people in it are my focus and what keeps me going. It's been important to me that you and the folks who share so much of yourselves are a part of my life and I'm grateful for that....every day. I'm thinking of all of you and wishing you peace!

Sent by Judith Tynan | 7:14 PM ET | 05-21-2007

I find your daily blogs and weekly podcasts very inspiring!

I'm celebrating today! I got the results of my latest PET scan and the results showed NO active cancer. My next PET scan will be in 6 months.

I'd like to share these thoughts with you.

I have learned life offers opportunities for growth in ways I would never choose.

I would never wish cancer on anyone, but must admit a surprise diagnosis of stage IV Hodgkin???s Lymphoma has given me some wisdom. It was not until I had to confront my own mortality that I felt at a gut level the importance of savoring each day. Before this, I had tried to be aware of the preciousness of the present, but would quickly get caught up in efficiently pursuing my daily agenda.

I had always thought there were many good years ahead of me. After all, I was very careful and health conscious. I've learned I only have so much control.

I am a worrier and will continue to do what I can to avoid suffering. I will eat my vegetables, exercise, wear my seat belt, and encourage my family to take precautions. I still fear the dangers, but am learning to accept whatever life offers and to try to grow from it.

I am learning the importance of today in treasuring the people in my life.

I feel very fortunate to not have had to deal with this disease until my 50???s and to have the incredible support of my husband, family, and friends.

I am very grateful for my oncologist and for the caring staff at the Stanford Cancer Center. I know I am lucky to be a patient of Dr. Advani. Not only is she a wise lymphoma specialist, but she also gives healing hugs.

I am thankful for the research that has made this cancer potentially curable. I feel lucky that my lymphoma has now been in remission for more than two years. I hope I will get many more years to use my new insights.

Living with cancer has been a difficult and scary journey, but it has taught me to be aware of the miracle of each day.

Sent by Vi Robertson | 8:23 PM ET | 05-21-2007

Since my diagnosis in January, I decided to answer the question of "How long," with the same answer suggested to me when taking my toddler daughter on long car trips. When she asked "are we there yet?" it was suggested I answer "in 20 minutes." Toddlers don't have a clear sense of time and 20 minutes can seem a very long time. So when my cancer asks how long it has, I keep repeating 20 minutes, 20 more minutes. My first oncologist told me I had 6 months tops, my current oncologist has told me 3 years on the outside. Time doesn't mean the same to me anymore. To my oncologist's surprise, my primary tumor has begun to shrink, the coughing from my metastatic lung tumors has significantly subsided. So unless I'm looking at a credit card experation date, I'm only going to count time in increments of 20 minutes - it worked really well with my daughter, who is now 33, and it is going to work really well for me!

Sent by Ellie Algatt | 8:57 PM ET | 05-21-2007

How long? The question I'm sure all of us asked when we heard that dreaded phrase "you have cancer." But like you Leroy, I think we do eventually come to terms with it. We come to some kind of peace - resolve - acceptance. Whatever you want to call it.

Like Ted Koeppel said on the Discovery program "we are all going to die. We are all terminal." I tell people now that the only difference between me and them is this...... my mortality (all of us who are diagnosed with cancer) literally slapped us in the face. We all know we are going to die HOWEVER how many of us think it will happen. Think we will get a disease. We all know it's possible but until it hits you don't think it will happen to you. But, it has.

We are the lucky ones. We were forced to look at our mortality and because of that we were/are allowed to do and say things that others people maybe are not. We have that second chance to make things right - to "stop and smell the roses" - to take life by the horns and enjoy the ride.

I thank God for all He's taught me. At first I would have traded it all to have my old life back but now I feel blessed to have been given this cross to bear. So much good has come. So many lessons taught.

Enjoy your life.

Mary Jo

Sent by Mary Jo | 9:48 PM ET | 05-21-2007

The time theme really hit home for me. I'm 9 mos into cancer world, and just finished treatments for my original diagnosis last week. Now that I???m finally through my mind???s been free this week to react to my cancer. I try not to feel lost but I am. I've looked to this blog and read comments to get tips on how to deal with it; be tough not wimpy. Brian's liking beating the deadlines. Ronald lets me know that cancer is always in the back of his mind. Estelle and Gretchen keep busy or go to amusement parks. Pattiann goes through the motions but everything's different. How do we live with being more intimate with our expiration dates? I did a freewrite, here's part: Future. Different. From stretching to forever, still plenty of time to this may be it. There???s like a void in front of me because of that. Scary to see my future with cancer knocking on my door again whenever it feels like it ??? or not. If it does it???s such a freakin'loud hard knock. I have to find the courage to live, fully live, within this threat and with these changes. I have to stop waiting for cancer to come back and believe, really believe that it???s not going to ??? not today. It???s hard to see the future one cancer-free day at a time. I want a bigger picture than that ??? and I guess that???s what I miss most of all. How do we learn to live without a bigger picture? Any suggestions

Sent by Lorraine | 10:20 PM ET | 05-21-2007

Leroy,
A friend recently taped your Ted Koppel interview for me and I just wanted to thank you for sharing your thoughts and experiences. I am a 51 year old with Recurrence Rectal Cancer. I was first diagnosed in July 2005 and in September 2005 I had a TME operation with permanent Colostomy. My Recurrence occured within one year and has been been a struggle to deal with since. I have had Chemo and Radiation to shrink the tumor and will have another operation to remove it within the next two weeks. I will then again start a heavy regime of Chemotherapy which appears to have many side effects. One thing that was not covered in the documentary was when do you stop questioning whether or not you are getting the best treatment? I seem very troubled with this next six month bout of Chemotherapy and am looking for alternatives. I often wonder if I should get a second opinion outside of my HMO which appears to have very good Oncologists on staff. Thanks again for sharing and best wishes on your fight against this disease we call cancer.

Sent by Don Cornwell | 10:23 PM ET | 05-21-2007

Thank you once again Leroy for the thought provoking topic. Like Doris, I'm just finished with my active treatments with a 50/50 5 year prognosis and it seems like everyone thinks I can just pick up where I left off 2 years ago. Reading the blog makes me realize how lucky I am. I never thought I would consider myself lucky with that prognosis, but here I am. My father died of lung cancer 4 months post rx. My mother was hit by a train and died instantly. My older brother died homeless at 38. My sister flat out disappeared when she was 15, so I've seen death close up from a lot of different angles, but it still doesn't make sense to me.

Sent by Patricia | 10:42 PM ET | 05-21-2007

Leroy,
I am so glad you got to go to Hawaii. I've always wanted to go however, that fear you talk about says what if I get sick there. I don't like hospitals at all even though I worked in one for 20 year.
I know since I was diagnosed with colon cancer that metastized to my lung 3.5 years ago. Dr.s have wanted to tell me how long I have to live. When U of M Dr.s just blurted out 3-5 years(sounds like a prison sentence doesn't it)I was in shock. Mayo Clinic was the next Dr.s I saw because I had such a difficult time with Chemo. Dr.Grothey was very kind and I told him that he need not tell me how long I have to live. He may be gone before me. I told him only my God knows when it is my time. I told him I was not a statistic and have never been a statistic. Although, my first experience with U of M stays in the back of my mind, I try very hard to leave it out of my mind. I wish they would have never told me. I believe that
each person has their stong days (hope)
and sad days (fear). The trick is to live each day as hopeful as you can in the face of fear.

Glad you had a safe trip back and I really love this blog. You have helped many people on all levels.

God Bless.

Beth Morrison

Sent by Beth Morrison | 10:53 PM ET | 05-21-2007

Hi Leroy and all, How long, I have really is a question I have shyed away from expressing outloud. Every time I ask it (in my mind)I feel like I am admitting that the cancer is going to take me. I am definitely not ready to go anywhere!! My husband says that I too have changed, he says I don't care about things the way I used to. He's right in some respects, I stopped caring about things that I don't think are important anymore, like if we owe a certain amount on our credit card or if someone didn't give us the right service. I put those in the manageable category. I do see everything through a cancer lens and have made some life decisions based on that lens. I left a job that I thought I would be at forever because I truly believed that the only place and way to do good work was to be in an environment where everyone was territorial and so competitive that underhanded methods were an everyday occurence. I am now in a supportive environment and doing better work than I ever did and work that I am proud of, not work that I wonder if people only knew what this place was like. I also made a decison to choose the things I care about, my family, my work and how I spend my time. I have dropped some "friends" that were drains on my time and emotions and now try to enjoy the things that my energy level lets me do. Sometimes it is doing a crossword puzzle, but it is a choice that I made and I am happy with. So I don't ask how long, because I really don't want to know. I want to be like everybody else and not know when the end is coming, and I hope it is still far far away. Thanks to you Leroy and all for creating this safe place to express how I feel- another place I choose to be and love it. Estelle

Sent by Estelle | 11:38 PM ET | 05-21-2007

Leroy,

Good comments today. I usually read "Our Daily Bread" on-line first thing in the morning. Todays reading is all about worry and fear. It ties in beautifully with what you said. I recommend that you all check this out Matthew 6:25-34. www.rbc.org is the site with the Daily Bread. You have got to read today's May 22 entry titled "Scardy Bear".

Sent by Betty in Germany | 2:26 AM ET | 05-22-2007

With all my heart I second Al Cato's comments.

Sent by Harriet | 6:17 AM ET | 05-22-2007

Leroy,

Welcome home! Once again you've started my day on a positive note. When I finally got up the nerve to ask about my prognosis my dear oncologist told me two to three years. Well, I'm two years past my expiration date and feeling fine. The only day we have is today.

This spring I planted perennials in my garden. This is surely an act of faith but I sure hope that I'll see them again next year!

I've made all final arrangements, taken 3 great trips, and continued my relationship with my wonderful SO who will be moving in with me this summer. We have planned vacations, renovations, and visited nearby places of interest "one last time." Then we visited them again. I've mellowed out and done all I can to provide myself with a stress free environment.

My fear of what is to come has been taken away by my volunteer work with our local hospice. I've had the privilege of being invited to join patients and their families during their final weeks and days. This is not depressing work. It is uplifting. I believe that my job here on earth is not done which is why I'm still here.

I try to live each day for what it is-a true gift.

Sue

Sent by Sue | 6:57 AM ET | 05-22-2007

LeRoy, I, too, had an especially hard time with this when I was first diagnosed- stage IV LC in 2001. They told me 6-8 months, and I was horrified. I kept thinking "I don't know how to die!!-- How to say good bye to my precious teen-age daughters-- how to gracefully exit without causing a scene--pain to those I love the most"

I had a doctor, my surgeon, who I am close with and we would have very heart-felt conversations. He said something once that has always stayed with me...he told me; "Lori, you have to get to a different plane of existance, one in which you can accept your own mortality, while at the same time not giving up" At first, this angered me, as I thought, 'he, too, just thought I would die soon- he really didn't have the hope I did of over coming this disease'. Over time, I came to realize that he shared my hope, he just was saying that we shouldn't let the fear of dying tomorrow steal the todays we have. Since then, I've come to live my life without stolen todays.

Sometimes, that's more difficult than others.

Lori

Sent by Lori Monroe | 7:08 AM ET | 05-22-2007

How long? That is the fearful, overpowering question. The answer I got put me in the box last January. Now I'm on borrowed time, according to the oncologists.

Reading all the other comments, and having discussions with so many cancer patients and family members of those patients, I can honestly say that oncologists are the worst predictors in the world. I mean, they seem to be always wrong. I don't accept that the fact of "how long" is arbitrary and difficult to predict. I think the metric they use to calculate this is horribly inaccurate, and based on parameters that just don't correlate.

I mean, really, I wouldn't let an oncologist pick my lotto numbers.

Somewhere in school these docs are trained to tell the patient about viable outcomes and realistic expectations. They should just stop it. They should teach these people how to read a watch instead. My oncologists, and there have been many, are perpetually late to my appointments. If I'm as late to my final date as they are to my appointments I may be around to vote for the next few presidents.

Somehow I think those short timetables oncologists predict are done on purpose. They know you will make it past that date, and maybe that will give you more hope and strength to fight. I would prefer honesty. And that is something this profession sorely lacks.

Ok good luck to all in your fight. I'm heading to chemo. Posting this comment makes me about 10 minutes late. I doubt it will be noticed!

Sent by Brian Bordelon | 7:30 AM ET | 05-22-2007

Thanks Leroy and the others for your insightful comments about 'how long'. I am struggling with that scenario myself, having been diagnosed with Stage 3 colon cancer at age 51. I am in completing my first 3-round cycle of chemotherapy and evaluating this 'wake-up' call for my life. My grandparents lived into their 90's and 100's, so I thought that I had many decades to go. However, I now feel that I need to get my life in more order; I liked the ideas of taking cancer along with you and the '5 year plan'. As I get ready to return to work, I know that it will never hold the same appeal to me that it once did. I vow to be a better manager and a better listener and not be so concerned about improving the corporate culture.

My near term plan is to be around when my son finishes college, see my daughter expand her music career, enjoy more time with my wife and spend more time with friends, putting them ahead of work, chores around the house and other mundane tasks. I can't say that my cancer is a good thing yet, but it does make you evaluate your life. Enjoy the ride.

Sent by Lou Loggi | 8:22 AM ET | 05-22-2007

I had a dear friend diagnosed in January of 2005. Her prognosis was dire. She was afraid. She said she felt immbolized because she felt she couldn't make any plans for the future. I asked her if she was ready to plan her funeral yet. Surprised, she said "no"...so I told her, "OK, if we're not ready to plan your death then let's plan your life. When the time comes to do the other, we will". She did live a full life over her remaining time even meeting and getting married to a man who knew of her condition and the prognosis of a short but intensely loving marriage.
From her, as well as from you and all of the others here at this site, I know to appreciate and savor every moment of this life.
Thank you for making me laugh out loud this morning. Can you imagine my husband's surprise when he asked what was so funny and my answer was, "I'm reading the My Cancer blog!"

Sent by Sandi Li | 9:46 AM ET | 05-22-2007

Hi Leroy and all,

For the last few days, since rereading the stats on my tumor, I???ve been somewhat more anxious about ???how long????

My best guess is that it will take the tumor 4 - 5 months to reappear from the last clear MRI. From then, the data suggests that, barring further successful intervention, it???s 4-5 months to physical death (Who knows what happens to us afterwards?). So I live in an 8 ???10 month probable universe that is renewed every time I have a successful MRI. So far, so good. As I wrote earlier, whatever cancer was left at the end of February had receded further by the beginning of May. So I???m probably good until at least the New Year. ???Probable is the operational term here.

And maybe longer. I???m still doing pretty well and have the examples of those of you who???ve contributed for years by example and action as inspirations.

And after this adventure nasty, challenging, and often miserable as it is over? Who knows?

Still I obsess more than I???d like to with the 8 ??? 10 month universe. I like it here and it???s ad to realize that in 8 months and almost certainly 8 years (which seems like a really long time) I???ll be gone. Nevertheless, I am tremendously fortunate in having the time that I have had and the time I have left.

For me like many of the rest of us, ???How long???? is only part of the point. ???How well???? is a much more relevant question ???What???s well???? is answered by each of us in different ways. For me, it has do with how I can live most intensively and meaningfully in the context of the family, communities and world that I am part of. I don???t always succeed, but it???s still worth the attempt. The anxiety is a challenge, for sure. But it doesn???t have to be an obstacle. It???s possible to work though it.

Severe depression is another matter, but even that doesn???t need to beat you ??? I???m living testimony as are many of us.

And, I think it???s important to work through the challenges that face us. As many of you have pointed out there are many things we can do to extend our lives into the future through what (and who) we leave behind and the memories we leave with them. We personally may not be around, but our lives will be. Many people don???t get this opportunity.

I am inspired by the many folks I have encountered who have lived up to their fullest up to their last moments as well as those of us who continue to live so as to defy all medical predictions of impending doom. No one can now how long we will live, but we don???t need to let that get in the way of doing what we can to enhance life for ourselves and others.

Life may be short, but it doesn???t mean that it can???t be full.

All the best

John Shippee
Atlanta, Georgia

Sent by John Shippee | 9:47 AM ET | 05-22-2007

Leroy, May I beg your indulgence to ask fellow knowledgeable and compassionate bloggers a question? I have a mate undergoing radiation therapy on his face, which is giving him a very sore and burning throat and cheeks. Nothing helps to relieve the burning, he tells me. But I wonder do fellow bloggers know of anything that can help? And a query for you, Leroy. We get the Discovery Channel Down Under, but Living with Cancer hasn't been shown yet. Can you please tell the producers there are Cancer sufferers and survivors and their families and friends who'd like to see it in Australia? Most important, you sound well. Long may it continue. Cheers, Tom PS I know you may not be able to post the first part, but I would like to see that doco. I have just emailed the Discovery Channel in Australia, and haven't heard back yet. I don't think I have missed it, as I just checked the TV listings for the month of May so far.

Sent by Tom K in Sydney | 7:13 PM ET | 05-22-2007