I don't know how many of you may have seen the New York Times article, CANCER PATIENS, LOST IN A MAZE OF UNEVEN CARE this weekend. So much of the story mirrors my experiences. My first oncologist offered me only pallative care. I got a second and third opinion finally leading to liver surgery. I had a small window and I was fortunate enough to be able to find a surgeon in that window. Of course, that didn't cure anything but it has bought me more of the precious time Leroy spoke about today.

This article points out doctors that don't agree on courses of treatment and the situations patients often find themselves in. We really do need to be our own advocates and learn as much as we can. Peace to all.

Sent by Dona | 8:26 AM ET | 08-01-2007

Good Morning Leroy and All,

Your comments about time are so true! If only we could capture time and keep some locked away so that we could draw out a little more every time we feel that our supply is running out. Then maybe Cancer wouldn't be as scary. The physical pain caused by this Beast hurts but the mental anguish of knowing that we may have to leave our loved ones soon hurts even more! Time, if only we can have more of it!

But since we don't know how much we have, and no one really knows, we have to use it wisely. And sometimes that includes the quiet times, pausing to watch the sun rise or to smell the roses. But most important, time to spend with loved ones: touching them, holding them and tucking them into our hearts. We have today to do that. We will not surrender today to fear, apathy or anger.

Another thing we can do with time is to use it to educate others about the early warning signs of various cancers. The reproductive cancers have been called, "The Silent Killers." Yet they do have early warning signs but it is difficult to get the word out as there is a resistence on the part of most of the media to talk about the reporductive system in a serious way. I think they are afraid that someone will be offended. But working together, we can get the word out. Please become familiar with the following information and then discuss it with your family and friends and ask them to do the same. Today we can give people more time through early diagnosis and treatment and we can save some lives.

early warning signs of Ovarian Cancer:
bloating, clothing feeling tight around the waist.
feeling full quickly when eating.
excess gas or indigestion.
Urinary frequency
Abdominal discomfort or feeling a mass.

Uterine Cancer:
Any unusual vaginal discharge, especially after menopause.
It may be watery, pink tinged or purlent
A feeling of fullness in the pelvis or lower abdomen.
Once there is abdominal pain or urinary frequency or incontinence, the cancer has already spread outside the uterus.

Prostate Cancer:
Urinary frequency
Difficulty starting or maintaining a urine stream
dribbling.

Testicular Cancer:
Feeling a lump in the scrotum
A pulling sensation in the scrotum
uneven size of the testicles.

If you notice these symptoms, please seek medical evaluation immediately. Some of these cancers, especially the serous papillary and clear cell variety are highly malignant and spread quickly. Of course, these symptoms can also mean that you have only an infection or other benign condition, but only your doctor can make that determination. So please become familiar with the imformation and pass it on to others. Lets put Leroy's Army to work! Thanks Leroy for helping to get the word out. And thank you all for your efforts in the education process. God Bless!!

Eileen Pruyne, RN
Charlotte

Sent by Eileen Pruyne | 8:30 AM ET | 08-01-2007

I couldn't agree more! my father passed away almost 3 years ago now and although we thought were prepared for his death we just couldnt stop thinking about time. It was a constant thought as he was dying as well as after he was gone, we all wanted just a minute more or an hour with him. That's the most important lesson i learned! I attempt in my daily life to never take the time i have here on earth for granted because you just never know when it is going to be pulled out form under your feet! Have a great day Leroy!!

Sent by Danielle Majerczyk | 8:41 AM ET | 08-01-2007

Dear Leroy, Talking about time was very helpful as I was starting to feel quilty about "wasting" time just looking out the window enjoying nature. Shouldn't I be doing something more constructive with my time? Like writing or playing the piano? It's not that I am ruminating about the bad things - it's just hard to do something when you are so tired from chemo and making decisions about treatment and wondering what comes next. It's an effort to think of and do something fun. SO thanks for taking away some of the burden of using my time for something "useful or meaningful". It's good enough if I enjoy looking at nature out my window!

Sent by Vicki (FL) | 8:43 AM ET | 08-01-2007

Leroy
The marbles are in the bowl....only put in beautiful ones because that is all I want to take out!

Sent by Patricia A | 8:54 AM ET | 08-01-2007

Good Morning Leroy,
Thank you so much for this blog and for today's post. Although i rarely write in, i read your blog every day. I share in your triumphs, i get angry with you and i laugh with you. Somtimes, there's nothing else you can do, But it really helps to know there is a community of people going though the same thing I am. Your posts are so brutally honest and so eloquently worded. and as another reader mentioned a few days ago, it is uncanny how much we think alike and how similar our experiences are.

Today's post was particularly well timed for me. My husband and I spent almost $500 last night taking our 4 year old to see the Lion King - she just turned 4 and will probably have very little or no memory of the evening, but it was important to me because i am running out of time. I feel so much pressure to fit everything in. It's something both my husband and i are aware of, but we don't know how to stop it. Last month, for her 4th birthday we had 15 kids over for a party and i insisted on making all of the food myself and baking the cake from scratch, etc. I just feel like i have to fit a lifetime of love and memories into the next year or so. We have even considered taking both our girls (4 and 1) to Disney, even though i once swore i wouldn't be foolish enough to try to take children under the age of about 6 to Disney World for fear of the inevitable melt downs and temper tantrums, not to mention the cost. But here we are. Logically I know that at 4 and 1, spending time together talking over a bowl of cherrios is as valuable as a trip to Disney, but i just can't help feeling like i'm in a race to get a lifetime of mothering crammed into how ever much time i have left. Time has become a burden.
Thank you for reminding me that it's okay to slow down some times and just enjoy life, that it's okay to do nothing, that i don't have to make up the time i missed with them because i was having surgery or too sick from chemo to get out of bed. i have felt very guilty about the time we could have spent together that we lost. And it's good for me to be reminded that time spent doing "nothing" isn't really wasted time at all. In fact, in life, i think sometimes it's when you're doing "nothing" that something special happens. My 4 year old is as likely to remember the giggle we shared in the car ride to the theater last night as she is the primo seats we had at the play.
Congratulations on making it past the 20 months mark!! How about aiming for the release of the 7th Harry Potter movie as you next goal? That's going to be mine. I LOVED the book and am interested to see how it is interpreted by the movie makers.
GO LEROY!

Sent by Tannis Brown | 8:58 AM ET | 08-01-2007

The bead suggestion had been mostly a joke.
I would like to see the readers of this blog do something to help others who might not read this blog, but I have said that before as well.

Mainly today I wanted to share words of wisdom I first heard from the great Calvin and Hobbes, the comic strip...
There is never enough time to do all the nothing we want to do.

Those words have comforted me since I learned I had cancer. Deal with the time you have, make it count, and don't worry about the rest.

Sent by Brit | 9:10 AM ET | 08-01-2007

You are such an inspiration to us all Leroy. May we all try to have the type of attitude you show us in your daily blog. God Bless.

Sent by Teresa in WV | 9:16 AM ET | 08-01-2007

What happens when we run out of time? I am a quilter and one of the sweetest women I have ever known who was in my quilting friendship group ran out of time earlier this year. She had been fighting breast cancer for more than thirteen years. She was an extremely talented quilter who did very beautiful work. She left some unfinished projects. Our friendship group has been working on finishing those quilts for her family. It is the least we can do for a great lady!

Sent by Charlotte Kewish | 9:25 AM ET | 08-01-2007

Leroy,

I received this from one of my Brother Knights of Columbus members. It's from a girl suffering from cancer and speaks of time.

Bob

Slow Dance

This is a poem written by a teenager with cancer.

She wants to see how many people get her poem.

It is quite the poem. Please pass it on.





This poem was written by a terminally ill young girl in a New York Hospital.

It! was sent by a medical doctor - Make sure to read what is in the closing statement AFTER THE POEM.

SLOW DANCE

Have you ever watched kids

On a merry-go-round?

Or listened to the rain

Slapping on the ground?

Ever followed a butterfly's erratic flight?
Or gazed at the sun into the fading night?

You better slow down.

Don't dance so fast.

Time is short.

The music won't last.

Do you run through each day

On the fly?

When you ask How are you?

Do you hear the reply?

When the day is done
!

Do you lie in your bed

With the next hundred chores

Running through your head?

You'd better slow down

Don't dance so fast.

Time is short.

The music won't last.

Ever told your child,

We'll do it tomorrow?

And in your haste,

Not see his sorrow?

Ever lost touch,

Let a good friendship die

Cause you never had time

To call and say,"Hi"

You'd better slow down.

Don't dance so fast.

Time is short.

The music won't last.

When you run so fast to get somewhere

You miss half the fun of getting there

When you worry and hurry through your day,

It is like an unopened gift....

Thrown away.

Life is not a race.

Do take it slower

Hear the music

Before the song is over.

--------------------

FORWARDED E-MAILS ARE TRACKED TO OBTAIN THE TOTAL COUNT.

Dear All:
!

PLEASE pass this mail on to everyone you know - even to those you don't know! It is the request of a special girl who will soon leave this world due to cancer.
This young girl has 6 months left to live, and as her dying wish, she wanted to send a letter telling everyone to live their life to the fullest, since she never will.
She'll never make it to prom, graduate from high school, or get married and have a family of her own.
By you sending this to as many people as possible, you can give her and her family a little hope, because with every name that this is sent to, The American Cancer Society will donate 3 cents per name to her treatment and recovery plan. One guy sent this to 500 people! So I know that we can at least send it to 5 or 6. It's not even your money, just your time!
PLEASE PASS ON AS A LAST REQUEST.
!

Dr. Dennis Shields, Professor
Department of Developmental and Molecular Biology
1300 Morris Park Avenue
Bronx, New York 10461

*****************************************************************************************************

This email and any files transmitted with it are confidential and intended solely for the

use of the individual or entity to whom they are addressed. If you are not the intended

recipient or the person responsible for delivering the email to the intended recipient, be

advised that you have received this email in error that any use, dissemination,

forwarding, printing, or copying of this email
is strictly prohibited. If you have received

this email in error please notify the sender immediately. Please note that we reserve

the right to monitor and read any emails sent and received by the Company in

accordance with and to the extent permitted by applicable legal rules.

*****************************************************************************************************

Sent by Bob Brandenburg | 9:28 AM ET | 08-01-2007

Time is a slippery thing....the way it can fly or drag. The way we sometimes wish it away, "I can't wait for it to be Friday" or "I can't wait to be 10." We're so used to it's malleable qualities that when something such as a dire cancer diagnosis and prognosis seems to be putting a finite end to it, it's a shock to the system, physically as well as mentally. I'm of an age now where I realize that my grandmother was probably my age when I was little, although she seemed ancient to me at the time. I have adult co-workers who can't remember actors, movies, songs or events that I believed "everyone" to be familiar with. I believe that anything that causes us to be aware of ourselves in our lives, to have appreciation for the time that we are in at the moment, and the lives that we're living now is a good thing. I suppose that that's what a lot of people may refer to as one of the "gifts" of cancer- that it caused them to be more present in their own lives, in their own days, and to be concious of the gifts that each day, each moment brings. When we are able to acomplish that kind of conciousness and gratitude, our lives are enriched and made more joyful. I think that that couple who used the bowls of beads to review their time together were very wise.

Sent by Nancy K. Clark | 9:29 AM ET | 08-01-2007

Ever since my diagnosis (March 2006) I have been much less hard on myself for spending time just sitting around and doing nothing. I no longer admonish myself for not doing something productive all of the time. I get great joy out of just watching the trees and mountains and lake from my livingroom sofa. The greens are greener and the lake is bluer than ever before. Time spent doing nothing is time well spent now. I'm very grateful for that.

I won't send you any beads, Leroy. I am sending you all my best wishes for lots more time to spend doing nothing but being in the here and now enjoying the many shades of green.

Sent by Laurel M. Jones | 9:34 AM ET | 08-01-2007

Time, sometimes it's a little bugger that can't be fixed the way that one would hope. Right now , I'm on chemo to buy me time so that I don't have to leave school for another craniotomy. It wasn't a suggested thing to do with my time. The neuro wanted to pull the tumor right away and then attack with chemo, but not me... I want to graduate! This cancer has made me lose a time in my life that I had wanted and now I have a chance to have some of that back and I'm not letting it happen again.

Yet, I think that cancer.. this tumor has allowed me to see time in a different way than some of my peers. I love to accomplish the worldly stuff, but cancer has shown me that time is also about enjoying the small things that can be so easily taken away... like walking in the square, move out day at college, and sometimes things so much simplier that the treatments make you lose and you have to relearn and even though it sounds sad it's opened my eyes to realize that a lot of times it's not the big stuff in the world that is remembered, it's the little things. Don't get me wrong though I love those big things too :)

Sent by Chanda | 9:57 AM ET | 08-01-2007

A bead to enjoy a book.
A bead to share the value of early detection, so you have more beads.
A bead to take inventory of blessings.
A bead to try being normal again.
A bead to enjoy some food, even if you are in the middle of chemo and it's a banana or some applesauce.
A bead to get the best care for you.
A bead to 'draw a bead' on another goal within a realistic time horizon.
A bead to cut yourself a bit of slack if you have not become a composer, writer, etc, but have just been a friend.
I just turned 59, and used to take an inventory of life's journey every five years, then perhaps each year at tax time. I always would reply to the question "what do you want for your birthday", 'I want another good year.'

I hope the clinical trial I am in buys some more good years. With four months of chemo ended some months ago, it hasn't been an easy year, but if it gets some additional time, it will have been another good one.

Great, thought-provoking pieces the last few days.

Sent by Jack Burrington | 10:01 AM ET | 08-01-2007

Good Morning, Leroy.
I'm struggling with something and have been since I began reading your blog. I don't know what to say to you. I want to be comforting, funny, wise ,etc... but I can never find the right words. I am so very sorry that this has happened to you. What do you like to hear? Words of comfort? Funny stuff? Music? (I'm a musician) Just what I happen to be thinking? What would brighten your day or at least help you through the day? Do you want to hear that you are brave? Because you are! Does the bead bracelet and the idea of the marbles really help you? What can I do to help you? One thing I can do is send you my love and thoughts every morning. And I will....

Sent by Lyn Banghart | 10:36 AM ET | 08-01-2007

This post couldn't come at a better time. I've mentioned before that I didn't want to get sucked into my old life of trying to "do it all" and "be the best at all times". Well, since my remission was declared I fell into the old trap. I was so excited with "The R Word" I wanted to prove how well I was. I wanted to show everyone that I was going to make all of this mean something and count. I wasn't going to wait a second and was going to earn all the praise I've received for my hard work and good attitude. I was going to get into great shape again to prove to the lung doctor I didn't need him anymore. I was going to get my business back in order and my social life rolling. Prove, prove, prove. Do, do, do.

While much of it was enjoyable it was all too much. Yesterday I totally bonked. I was in a mess of tears. Tears of exhaustion. We all know that type of exhaustion is bad for the immune system and could be lethal for those of us trying to keep cancer from coming back. Well, I did it to myself. I got sucked in by my own hype. When I was going through chemo I promised myself that I would (within reason)do things that I enjoyed and not be so married to a schedule. I swore I would no longer value myself based on what I accomplished on my "to do" list. I decided I didn't have to be the best, I just had to be and appreciate. Yet, despite those wise words, I fell into the trap.

I did come to the conclusion that this had to stop this morning and then I read your blog. The timing of it was just down right scary. I realize now that years of the habit of proving and doing are hard to stop without constant reminders. However, this time cancer won't have to knock on my door to remind me to stop before I'm tired and just be and enjoy the view out my window. I am not my accomplishments. I am just me and that is enough. I don't need cancer anymore to tell me this, I also have you Leroy and the readers here to remind me.

Thank you everyone.

I'm going to go and sit and ponder my bowl of beautiful marbles.

Hugs,

Lori

Sent by Lori Levin | 10:38 AM ET | 08-01-2007

You have hit upon the greatest philosophical and spiritual dilemma of all time, all people, everywhere. Our blessing and curse is that as human beings, we are the only animal that is aware of our imminent, inevitable death. We tremble, we make bargains, we beg, we pray, all to no avail. We construct heavens, afterlives, hoping against hope, becoming irrational, childish, confused.

Perhaps it is the appropriate time for you to accept your inevitable passing, submit graciously to it, look forward to the inexorable fate that every living being experiences. Rather than fear, I would suggest that you envelop yourself in the most profound emotion we humans experience, that of love. Love of life, love of beauty, love of the moment. Live in that moment and feel blessed that you are leaving a momentous legacy, whose agenda was originally a reporter's, and has now become that of a cherished friend who has the courage to reach out and witness his own passing.

Become an enlightened being. The past is but memories and thoughts of the past can only summon the emotion of regret. The future is unknowable and thoughts of the future can only summon the emotion of fear.

Be in each and every precious moment. Experience the beauty of the here-and-now; let the past and future retreat to nothing more than fleeting thoughts.

Sent by Sally Siegel | 11:31 AM ET | 08-01-2007

Leroy, I read your blog everyday, and while I may not say much, I internalize your words and have continued to process what I've been through, as a direct result of reading your thoughts. Your comments on July 30 were most powerful - and have haunted me ever since. I hope you'll sincerely consider having these writings published - you have helped an immense number of people through this dialogue and I believe this is what your legacy is meant to be. You are a light in the darkness for us all.

My thoughts and prayers are with you.

Sent by Martha | 11:42 AM ET | 08-01-2007

Congratulations, Leroy on the 20 month mark! I agree. Time was the most precious commodity my husband and I sought in his pancreatic cancer treatment. At diagnosis, we were told that he had 6-12 months, on average; that chemo might make the diference of a few weeks. I rememember thinking, "I want those few weeks". I/we were determined to turn days into weeks, weeks into months, maybe even months into years, as many as we could. As it turned out, he lived 18 months after diagnosis. People say he did very well (and he did!) but, although, we packed a lot of life into those 18 months, it simply wasn't enough for us. I do feel robbed.

The other thing we learned, it's exhausting to live each day as if it is your last. Even with cancer, you need to just have some ordinary days.

Sent by Marilyn | 11:46 AM ET | 08-01-2007

Good Morning Leroy,
Your blog, your life, your time has meant a great deal to me personally on a daily basis. I am grateful that my life, my time has been enriched by your extraordinary life and talent and underneath all of that ...we see your courage. Is it selfish to want more of that quality in my life...because I do. I want more time with you. _Jan

Sent by Jan DeBerry | 12:03 PM ET | 08-01-2007

Leroy-

Congrats on 20 months and beating the odds!! You are strong like bull!!

Kathy Bero

Sent by Kathy Bero | 12:15 PM ET | 08-01-2007

Thanks Leroy..this is perfect timing. Time is a wonderful thing but I think when we know it can be taken away. We have and get a different point of view on it.Have a good day.

Sent by Kerry | 12:25 PM ET | 08-01-2007

Lori..I have read your blog however I never posted there. I am sorry for that.
I read your post and there is so much understanding for what your write and convey to all of us.
I don't have breast cancer but lymphoma. I to was out to prove..I did this big thing and got to remission. I am a doer not a one to sit back and see things from a distance.
I to would go do do do and then was slammed for a week cause of the fatigue.
I learned I couldn't do that and it came with many tears as well. I kept thinking I want my life back the way I was before. But I wasn't the same person many things had changed.
I remember one day being so mad I was doing well why couldn't just do what I wanted. But I was sitting here crying my heart out cause I couldn't move another muscle. Even crying was using to many for that day.
I learned the biggest thing was to pay attention to my body and rest when I needed to.
Yes some days that is frustrating but I those are the days I do art work or read or do things of interest and regroup.
Those quiet times bring me so much as well.
From what I have read in your blog and here. I don't think you have much to prove. I think you have done that already.Just take care of you.

Sent by Kerry | 12:42 PM ET | 08-01-2007

To Bob B and other readers:
Unfortunately, the sad tale is an urban legend. Go to snopes.com and type in "Dr Dennis Shields" to get to the full description.

Part of the snopes.com comments read as follows:
"This message is one of many variants of the same basic long-running hoax, one which falsely claims that
the American Cancer Society or some other charitable or medical organization will donate a set amount
of money every time a particular e-mail is forwarded."

Please don't keep this circulating by sending it to anyone else on your email lists.

Sent by Blaze | 12:44 PM ET | 08-01-2007

Hey Leroy,

Wonderful topic. I have been thinking alot about this as well. Since treatment, I find that I am developing a reasonable disgust for multi-tasking. I am so tired of trying to cram absolutely everything into a day. What I get done, whatever that is, is enough.

I have found that I am slipping back into that working around the clock rut that I was in prior to my diagnosis. I actually maintained that, to a point, during radiation, which helped me focus on something other than what I was going through. Being a year out, there are times when I forget for a split second that I even went through treatment. But then I swallow, and remember that, Oh that's right, I am missing one of my paratid glands, as I sip on some water. I notice that I have less tolerance towards hectic activity. Wildly running around, observing nothing, has no value. I am not saying we all have to travel to exotic places, do exotic things. I am really learning to appreciate the things, sites and sounds around me. Everything is truly special. To sit, to read, to listen to music or a good conversation, is wonderful. Just as with this ramble, a little long, but that's okay. Whatever works for that particular person is the key. Trying to get others to understand that, that's the bigger task at hand.
Stay safe, stay strong,
Lance

Sent by Lance Carlson | 1:08 PM ET | 08-01-2007

The Cancer Society thing is a SCAM. I sent it to everyone I know because it appeared in this site. NPR needs to check this stuff out before printing it.

Sent by Diana Kitch | 1:29 PM ET | 08-01-2007

Leroy,

I hope you have a few moments today to really read the posting by Sally Siegel, for it truly contains the wisdom we all seek.

Sally, through grateful tears, thank you so much.

Michael Lewis
Seattle

Sent by Michael Lewis | 1:55 PM ET | 08-01-2007

Absolutely loved today's post...love the idea of the marbles/beads and I will use that idea in my practice as I counsel families dealing with cancer. I am also putting today's thoughts into my personal life as I attempt to regroup and find a new rhythm in my life now that caring for my Dad is done. So this weekend, as my family and I are enjoying the beautiful Adirondack Mountains, kayaking on the lake, listening to the loons, laughing and crying as we sprinkle Dad's ashes, I will be present and be thankful for this time we have as a family together. Thank you again, Leroy, for your wonderful thoughts....

Sent by Karen | 2:18 PM ET | 08-01-2007

Yes,it's easy to fall into the trap of trying so hard to "make every moment count" that we become too busy to notice and savor those unexpected moments of beauty that come our way. My husband and I do something similar to the marble idea: every night, before dinner, we take a moment to hold hands and mention something about the day that we feel grateful for. Yesterday, it was the hummingbird in the backyard that hovered close to my face to investigate my orange shirt.

I want to go off topic briefly, to comment on Dona's posting this morning about the NY Times article that says we must become our own advocates. A couple of days ago, I had a disturbing conversation with my oncologist. She was annoyed that I had demanded an MRI and after my HMO rejected my appeal, I went to the CA Dept of Managed Healthcare and they sided with me. Well, the MRI report was inconclusive but "could not rule out a recurrence." So - she said somewhat testily that she was sure I would insist on more tests. Then she went on to say that her patients can be divided into 3 groups: those who never question her advice, those who can be persuaded if she just says, "Those are the ASCO guidelines" or quotes a study or two --and the 3rd group, into which I apparently fall -- the patients who are going to do their own research, ask for 2nd opinions, question her advice, and not take no for an answer! Then she went on to say she didn't want to discuss my MRI appeal because then she'd have to express her feelings, and then we might argue...and that might interfere with her giving me the very best medical care of which she is capable. I was stunned. Does that sound as if I'd better be docile, stop questioning and advocating for myself, or else? I don't want to change doctors. Basically, she's intelligent, well-respected, and caring, and there are no better choices that I'm aware of unless I transfer to a different facility that is much farther from my home. I think she sees me as a troublemaker, but that's not my intention. Any suggestions or comments can be sent to my email at dsimonis@surewest.net. Thanks.

Sent by Doris | 2:53 PM ET | 08-01-2007

Leroy,

Maybe we don't "waste" time if we are doing what we want to do with it. Other people might make judgments about how we spend our minutes, but if we are happy, what business is it of theirs? Cancer patients in particular need not feel guilty for doing whatever gives them happiness.

Sent by Diana Kitch | 4:45 PM ET | 08-01-2007

Leroy,
I watched your tv special and felt I just wanted to "hug" you. I liked the "bead" suggestion. I was diagnosed with breast cancer (hormone positive) in Oct 2005. I began chemo (A/C and Taxotere) end of December of that year. I had chemo for 6 mo then from June 23 to Aug 22nd when I had a radical mastectomy and removal of 21 lymph nodes (all cancerous) I'd not had chemo. wow! Beginning in July 15th 2006, I'll never forget getting my appetite back. I ate a good breakfast!
I had 29 radiation treatments in September. I also was told in September that my cancer had moved to my bones. I began Zometa treatments once a month. Then in March of 2007 I was told it'd spread to my liver. I then began Taxol and Avastin (along with the Zometa) as my new treatment. I sit and wonder daily about this. I do all this to live longer and be able to spend time with my family. It doesn't seem fair that while we're sitting here alone, our family members are having to go on with daily "work" life and don't have the "time" to spend with us. Wouldn't it be wonderful if we could all take a week off a month to just hang out and "talk"? I'm expecting my first grandchild (have 6 step-grandchildren who I love also) September 9th (due date). Back in March, I was so scared I'd not live to see him born but after sitting around planning my death for three weeks, I decided I couldn't live that way so I stared planning ahead. You know that is what people do when they have "hope". I can fully understand when people get so sick they haven't the energy it takes to want to live longer. I've seen that happen to others. I feel I've so much to give to others, to tell others about regarding cancer and early detection and those self breast exams (which I did not do). I'd had mammograms yearly and my doctor had started requesting them on a 6 mo basis but my work dropped my healthplan and I had to change. Due to their having written in my records I suffered from depression, I decided to not have my records forwarded and let the new health plan just start from square one and perhaps they'd not always note I was "fat, over forty and depressed". For years I belonged to Kaiser and that's what they'd say and turned out I was very diabetic. They'd never even given me an AC1 test. Long story. Anyway that was my reasoning for not having the records forwarded. Not a good decision it turned out on my part. I sit or lay here making quilts in my head, doing gardening, driving to Oregon (from CA) to see my sisters, just doing all kinds of stuff now that I'm retired.
Yet, I haven't the strength and stamina to do much of anything but talk to others and wear that darned remote control out. Ha! Now, your 20 month accomplishment, is that 20 months from diagnosis or 20 months on chemo? I wish you well and I wish your wife well.

Sent by LindaW | 4:51 PM ET | 08-01-2007

Leroy:
I regret to post that my husband, Burge Schwerdfeger, died Saturday, July 28 at 9 am in his home. The funeral was yesterday and was attended by more than 425 people. We live in a small community where everyone knows everyone else, but that was still an impressive turn out. We never realize how many people were pulling for us.

I just read your comments about Mrs. Romney and I can tell her, Burge's death was far from easy. There were time the last two days we thought we just could not stand it any longer. His cancer just seemed to explode throughout his body the day he declared he was "done" and wanted to go home from the hospital. None of the pain med's seemed to be doing anything even when increased and at one point, I thought no one in the world would condemn a loved one who helped their dying family member pass.

But, Burge was home, with his two sons, his wife, sisters and Mother...right where he wanted to be. He's now where he has to be and hopefully he's at peace.

Nikki

Sent by Nikki | 6:01 PM ET | 08-01-2007

Ah yes...TIME. Since I was diagnosed with non-small cell lung cancer in early June, I have been in a time-warp. A week or two for every appointment...a week or two for every test result...time x time and then time again. Next Monday I see the surgeon...probably not much time 'til they remove my lung. Then the dreaded chemo.

I live alone (with my cancer) and pride myself in flexibility...no set time to eat, or sleep, or read, or meditate. I live like I have all the time left in the world....even though I know I don't. But, "if I could save time in a bottle.....the first thing that I'd like to do is".... (I can't forget that this hit song by Jim Croce was released just about at the time of his death).

I'm a reluctant abductee into Cancer World where something else changes the hands on my clock now. But I'm happy that I still get to rewind the darn thing everyday.

Sent by Cyn Hennard, Vermont | 6:24 PM ET | 08-01-2007

Dear Leroy and Good Friends,

This is quite an appropriate topic for me today also, because I feel more hope today than I have in a long, long time. After insisting so many times and from pointing out to my doctor that my urgent desire to find some quality of life was not only physical and emotional, but spiritual as well, I was able to get a referral to a physician who specializes in Breast Cancer at a research hospital, one that is very well known and respected and mentioned before on this board, Emory University Winship Cancer Center in Atlanta. I had not mentioned it before today because I wanted to make certain the plans were finalized, but I found out this afternoon my appointment with them has been made and everything is a "GO"!! I feel as if I now have a good chance, at least much of the mystery will be behind me. It has been very difficult this past 16 month to not know whether the cancer was resolved in my surgery, particularly since there have been so many indications of problems, but the physician I will be seeing is known for good "detective" skills, which is something a person in my position really needs. I think the sweetest words I heard today were "she cares about her patients and is a very good listener". Any of you who know my battles over these months to find the proper care will understand what this means to me. I would not have dreamed of even starting a "bead bracelet" before now, but I am formulating a design in my head as we speak, looking forward to adding those beads, one at a time, and I realy like Bruce's idea about a office-color-friendly bead bracelet that would be recognizabe to those to whom it I apporpriate, but not so gaudy and tacky that it would stand out and give those who are not in the group of AWARENESS a reason to judge the person wearing it. None of us needs any more discomfort than we have already experienced, and I think the idea would catch on quickly and spread to many places yet unknown, perhaps worldwide. I would love to be a part of the group that started THE LEGACY OF LEROY AND FRIENDS and would like to participate in helping with the color selection, as well. This could also tie in with the first post today that brought attention to the article in the New York Times, "Cancer Patients Lost in a Maze of Uneven Care", and help to call attention to the crisis in this country that continues to plague us, the enormous numbers of people who do not get proper care they need and deserve, and those who do not get care at all. I would be proud to wear LEROY'S LEGACY anytime, anywhere.

My sincere thanks to all of you who have helped me to get to this point of hope and given me the vital suppport to hang on until I could find the solution to the dilemma that robbed me of much of my desire to fight. With a renewed
sense of hope, positive anticipation and motivation, I cannot find the words to adequately express my deepest love and appreciation for all of you who have helped me so much. NOW, I feel a sense of fight again, something I have yearned for longer than should have been necessary.

Love, Briana

Sent by briana | 7:26 PM ET | 08-01-2007

Dear Leroy,
Stay strong! You have surpassed so many "predictions"! I am in a similair boat, I was diagnosed 17 months ago with cancer of an unknown primary. It was discovered in my abdominal wall and has also spread to my pelvis and most recently my live. I know that statistically I am so far ahead of the game. I fight the beast every day, even on days when I am within an inch of giving up. Your blog is such a gift to all of us who are bound by this disease. We are members of a group that I pray will one day cease to excist. Until that day, fight on my friend, the best is yet to come!

Sent by Martie | 8:49 PM ET | 08-01-2007

I started reading your column when my brother was diagnosed with Colon cancer. There was no history of cancer in our family and it was a shock to all of the siblings to find the healthiest, thinest and most in shape member of our family was diagnosed with cancer. He went in for a routine colonoscopy where it was detected. During the later test performed, it was discovered he had two cancers, the colon cancer and a soft tissue sarcoma located in stomach cavity. This was the more serious of the two and caused no symtoms. He was lucky to have access to a very good hospital although 5 hours away where a team of doctors removed the mass with some organ parts, a section of colon included. He is recovering. I don't know what the future will hold for him, perhaps he will be cured. I hold on to this hope because I choose to. You could argue that his colon cancer saved his life because without that he would never know he had the other form of the desease. Needless to say all of the siblings have had their colonoscopy or is scheduled to get one. I choose to believe in miracles because I still can. I hope you will be cured, at the very least I hope you still have the capacity to believe in being cured, then perhaps your cancer will not win the war only the battle. Good luck.

Sent by marilynH | 8:51 PM ET | 08-01-2007

Leroy- I almost died about 28 years ago. Since that time, I appreciate time a great deal. Every year on the anniversary of that almost death, I journal about my year, my observations and successes or challenges. My sister's death has put things into perspective even more and I don't wait for the year to review my thoughts.

Sent by Fern | 9:06 PM ET | 08-01-2007

Dear friend:
My heart told me I should cut and paste Jan DeBerry's note to you today, because she has put so beautifully into words what I am feeling:

Your blog, your life, your time has meant a great deal to me personally on a daily basis. I am grateful that my life, my time has been enriched by your extraordinary life and talent and underneath all of that ...we see your courage. Is it selfish to want more of that quality in my life...because I do. I want more time with you.

Sent by Harriet H. Liss | 10:46 PM ET | 08-01-2007

Hello Leroy,
Thank you for the blog. I've learned so much from your wonderful outlook and how many others feel as I do. Today's blog about time reminded me of a song by my favorite group called Lowen and Navarro. Eric Lowen was diagnosed with ALS a month before my breast cancer diagnosis. He wrote several songs about how he was feeling on the CD which is entitled, "All the time in the World". I could relate to his feelings and words in the songs. It is a wonderful CD. I continue to see them in concert but ALS continues to debilitate Eric and rob him of his beautiful vocals and he now needs constant assistance. Before diagnosis, I took time for granted but not anymore. I hope time continues to be kind to all of us.

Sent by Karen | 11:39 PM ET | 08-01-2007

Just a quick note to you Doris. Over the past 7 years I've met with two chemo oncologists and they both were arrogant and literally screamed at me when I asked them for the truth about the effectiveness of chemo for my particular situation. It's (knowing how to scream) has got to be part of their job description, you think? :-)

I was told I was stupid and was going to be dead because I refused their recommendation for chemotherapy for a cancer that they admitted wouldn't be helped all that much by it. (First time I was told I'd be dead within 6 months was in 2000 and then again in 2005. I'm convinced that there is a huge financial incentive in this for chemo dr's. Sorry if that offends anyone, but I was offended to be treated like an idiot.

Sent by Vicky (NY) | 8:14 AM ET | 08-02-2007

Leroy,
I have just begun to read your blog and I thank you for sharing such a personal situation with us. Today you're talking about time like it's a friend. As a caregiver I see time as such an enemy for the most part. Our lives are based on waiting for the next test, the next call from the doctor or the next treatment. Time for the pleasures in life gets sucked up by time spent traveling for doctors and treatments. I pray that one day soon I can have your wonderful outlook, like my husband does, on this precious thing we call time.

Sent by Kathie | 8:24 AM ET | 08-02-2007

Nikki

Sorry for your husbands struggle and his passing. I know how difficult that is. All of you have been through so much. Wishing you peace and quietness for now.

Sent by Irene | 11:52 AM ET | 08-02-2007

(Sorry if this is a duplicate -- I think my first effort at posting got lost in the ether.)

Nikki - I am so sorry for the loss of your husband Burge and for the suffering you both had to endure. You are in my heart today.

Vicky - Thanks for your comment. I don't want to believe doctors could have ulterior motives, and in fact, even though I disagree with my doctor, I believe she wants to heal/help her patients above all. However, a June 12 article in the NY Times does point out how much some oncologists have profited from having lots of patients on chemo... Here's the link:
http://www.nytimes.com/2007/06/12/business/12cancerpay.html?ex=1186200000&en=44da741ed744d7d1&ei=5070

Sent by Doris | 12:45 PM ET | 08-02-2007

Hi everyone. I found the below list of questions on the leukemia and Lymphoma web site. I think they are a good starting point with your doctor when first diagnosed with any cancer.

Wishing everyone the best.

Karen Cop

Is care covered by my insurance plan?
Are you Board certified and licensed?
Are you a member of any professional societies?
Are you experienced in treating leukemia, lymphoma (or other blood-related cancer)?
Where would I receive my treatment?
Is your hospital, cancer center, or clinic accredited and experienced in treating blood cancers?
Am I eligible for stem cell transplantation?
Are there local facilities to obtain a stem cell transplant?
How long would I usually have to wait for appointments or returning of my phone calls?
Are you or a member of your staff always available in case I have questions or problems?
Will there be nurses, social workers, and case managers available to help me with my physical needs and quality of life concerns?
If pain becomes a problem, how would we manage it?
Am I eligible for a clinical trial? Are there any clinical trials available through your hospital, center, or clinic?
Are there any other oncologists specializing in blood-related cancers with whom you would recommend I speak?

Sent by Karen cop - New York City | 12:59 PM ET | 08-02-2007