The Givers of Life

Laurie's days, are no longer her own. The cancer has stolen those days, changed them from the life she would want to lead to the life she has to lead. A life of caring for me.

Here are her thoughts on that ...


Good morning to all of you "life-givers" ... previously known as "care-givers." I've decided there needs to be an amendment to this term "care-giver" ... especially in Cancer World.

Giving CARE, in this world, is an automatic function of our daily lives, and it is a function that operates on a 24-hour clock.

If you're like me, sleep is not what sleep was, BC ... before cancer. Sleep comes now with one eye open, and both ears trained to hear any sound that isn't a sound of the night.

And it's all the other stuff that plays a part in the giving — from making a meal, to playing cards, to just sitting by the bed, holding a hand.

It's the "life" part of the giving that is so important to acknowledge. We all give our "life energy" every day, to continue the life that's been attacked by this unrelenting enemy.

We'll do just about anything to make "their" day, every day, because we don't know when it will be the last day.

It's a breath-taking challenge. Somehow we find the strength. I just think it's important to salute you, "givers of life."

Remember ... Leroy will be on "Talk of the Nation" at 3 p.m. EDT today with guest host Ted Koppel. You can hear it on your NPR member station, or here on the blog, where there will be a live chat during the interview. Then Leroy will answer your questions starting at 4 p.m. EDT.

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Isn't it a shame that the richest nation, with the highest standard of living, the greatest world power, the country that went to the moon, has to rely on kids selling lemonade while their parents get their heads shaved bald to try to stop the #1 killer of our children?

While it sounds like a bad comedy, I put forth that it is a tragedy.

It's up to our kids to sell enough lemonade? Up to us to get our heads shaved bald? To get petitions signed?

They even agree! And write about it! From CURE Magazine - "Picking Up the Pace - Igniting progress in the cure of children with cancer" To paraphrase - "we must enlist friends and families of children with cancer to secure funding for research" ! What?

What are the last 2 national tragedies you remember? The Challenger and 9-11? Did they call the astronaut's families and ask them to assist on determining the failure temperature of the O-rings? Did they tell the victim's friends, we need you to come in and help us figure this war thing out?

I know how they felt. I will never forget the days/months in the hospital. The feelings of powerlessness, out-of-controlness. Not that I didn't advocate, research, learn, fight for, scream. But inside, sometimes it seemed my primary function every day was to not only do the stuff to support Age, but, at the time, to me, importantly, NOT step on the medium green colored tiles on my trips back and forth to the break room for ice, snacks, coffee, whatever. THAT to me was the only thing that I could truly control about all the things going on. And it was my goal to NEVER EVER step on one, and then everything would be OK. Sounds ridiculous now doesn't it? But I bet the 9th floor nurses knew what I was doing after awhile, had seen someone like me before, weaving back and forth as I walked down the hall, looking down balancing plates and spilling 2 cups of coffee. When you are fighting the war as a parent, it is hard to do much more that truly affects the reality, your journey, or the outcome. So you do what you do.

So let's keep doing what we're doing, apparently they need us to. It makes more sense than not stepping on medium green colored tiles. I guess.

http://www.thepetitionsite.com/1/CureChildhoodCancer

AJs Dad

Sent by AJs Dad | 7:27 AM | 7-9-2008

Thank you so much Laurie. Your words bring tears to my eyes as a "life-giver" for a number of family members and friends over the years. I've written about these opportunities to "give-life" a number of times on this blog. Once in this mode I am astonished that I do so well with the "one eye open" syndrome at night...such little 'normal' sleep. It seems to transform one into another mode of functioning with energy coming from some where - I don't know from where... I guess it's because we get so much in return from such "life-giving". We can fight the "Beast" in a way that seems to help more than the medical world can do at times: that's the power of the medicine of love. We are "love-givers" and there is no limit to that under these circumstances. Your words are so perfect there is not much else to say, but "thank-you".

And as for you Debra from New Hampshire: My heart goes out to you...you are a sweet heart and a fighter with a great heart. I hope you have a "life-giver" in your heart. And, yes, it is a beautiful spot here with the bay and the Ocean at hand. Thanks for your comment. Love to you, Leroy, Laurie and every wonderful soul here. Graham fron Sag Harbor.

Sent by Graham G. Hawks | 7:48 AM | 7-9-2008

Laurie,
God bless you, and thank you for sharing what is on your heart.

Sent by Lisa D. | 7:51 AM | 7-9-2008

We cancer patients know from whence one very important source of our strength comes.....our life givers!! Amen. Doing the things that should be done and must be done each day and night without any fanfare or need for acknowledgment is the work that life givers do for us. Laurie, you are in that elite group of selfless life givers and I salute you and all those who are in this very special group. Without the dedication and love you demonstrate each day and night, the journey in the cancerworld would be very bleak for us all.

I have always believed that there are "angels on this earth". I have seen their work and have been a recipient of their love and care. Not just anyone can do what they do. It is a noble calling. Laurie, you may call yourself a life giver and you are but I call you an "angel on this earth". You are special as are all life givers.

Blessings and prayers as always.

Sent by Al Cato | 7:54 AM | 7-9-2008

Good morning Laurie and Leroy,

I like the new term, "Life givers." Your description is very true. We do what we have to do, ignoring our own needs, and in essence giving up our priority for someone else.

Within days of my sister's diagnosis, she had to have a tracheostomy (opening into the trachea to breathe) and that was scary for both of us. I slept on her couch, we had walkie talkies so she could "beep" me if she needed help. After a while I moved back to my place to sleep walkie talkie on my nightstand. One night, I was asleep, thought I heard it, and barreled out the door. I had dreamed I heard the beep.

Remember, take time for yourself, and get away for a while if possible. Even an couple hours is worth it.

Life giver

Sent by Sue Chap | 7:56 AM | 7-9-2008

I want to direct my comment to Leroy instead of Laurie.

I am a caregiver for my wife Cindy, who is also your age. This has been a 12 year ride, with 5 different cancers. The loss of her leg, all the way to her hip, the breast cancer, the mets to the brain, on and on.

It's been difficult at times but also made so much easier by the wonderful outlook on the part of Cindy. She somehow manages to ignore this continuous assault on her body and on her life. Cindy is the most positive, upbeat person I have ever known.

That is one reason that my role as her caregiver is so enriching. I would not dream of doing anything else with my life.

This cancer has not stolen my life. It has changed my life for sure but in a good way.

I now consider the primary purpose of my life is being Cindy's caregiver. It's who I am and I do so gladly.

I think there's a chance Laurie feels the same way.

Sent by Tom | 8:02 AM | 7-9-2008

Laurie, thanks so much for the insight. Take care,

Sent by sarah | 8:04 AM | 7-9-2008

Laurie,
You write so well, saying difficult things which are so true.
Leroy is blessed to have you in his life.
It is wonderful you are living each day as if it was the last..every one must do that. People who complain and complain about any and every little thing, miss the concept that life is precious. Again, Leroy is blessed. You sound like a beautiful person.
Prayers,
Wanda Amorose

Sent by Wanda Amorose | 8:15 AM | 7-9-2008

Laurie,
I think back on the days I was Neil's life-giver and I am amazed at how strong I had become. I did not sleep, not because of worry, but because he needed me to be strong and help him. Up and down every few hours. Clean up duty every few hours, and your right, you want every moment to be a special one for that person. Would I do it all over again? You bet! Would I trade those days for a different life? Not a chance..... When you love someone, you don't even have time to think about YOUR options. You just do it...I would not change any of it!
I am sending you hugs! I am proud of you! You and Leroy and this community are in my prayers! Thank you for sharing! Peace...

Sent by Laurie Hirth | 8:18 AM | 7-9-2008

Dear Leroy & Laurie,
I said it in an earlier post & I'll say it again. We patients would be nowhere if not for our "lifegivers"! They are the ones with the toughest job of all.

Laurie, that term is SO right! And thank you for all you do - including taking SOME time for yourself.

Sent by Judie in CT | 8:20 AM | 7-9-2008

Laurie,
I am responding to Leroy's comments about "(changing) the life she would want to lead to the life she has to lead," but I am thinking of you.
For what it may be worth, I remember someone whose life changed overnight when her husband was diagnosed with a very aggressive form of cancer. Most vividly I remember her words - repeated over and over - "I just want my life back." From the vantage point of old age I knew something she didn't know yet, that what we call "life" is the sum total of every moment in whatever shape those moments unfold for us. Even if her husband had been instantly cured, her life would never have been the same because of what they had already experienced together.
Some of those unfolding moments are not easy, as you well know, but I hope to encourage you by saying how blessed I think you are that you are able to be at home with Leroy, caring for him as you do. Leroy is blessed to have you. You are blessed having each other.
L. Stone

Sent by LYDIA STONE | 8:28 AM | 7-9-2008

Laurie..... There will come a day, although we dread to think of it, when you will take great comfort from knowing that you gave your all to make Leroy's life easier with your "life energy". Believe me, it makes all the difference in the world.

Our thoughts and prayers are with you both, every day, but special prayers for you, for caring for our special friend.

Sent by Betty Obst | 8:29 AM | 7-9-2008

Leroy and Laurie, you both offer so much to this blog community. Laurie your words have spelled out what life is like shareing a life with someone who has cancer. I know my husband had worried so much that it was takeing over both lives but it just becomes natural when you care about someone else. Even though my husband passed away in May of this year I continue to listen in the night as you discribe. Again as with Leroy, you two discuss matters that I don't think anyone outside of this community, or dealing with any other terminal illness can possibly relate to.

Leroy, I wouldn't have traded places with anyone else. I hope you are comforted by Laurie being there as I hope and feel my husband too could draw some comfort knowing that I would be there if needed. I think the term "life giver" is well said.

Thank you Laurie for sharring with us. I will continue to keep both you and Leroy in my prayers and ask that you both find the strength to go through this time. We all care!

I feel so bad that I will miss the interview today as I have to work but will try this evening to see if I can find a way to listen to it.

Sent by dorothy in oregon | 8:32 AM | 7-9-2008

I am not very sick,,,yet. But, when I started this ride a 2 years ago, going through surgery,waiting for test results, going to various Doctor appointment, weekly chemo treatments. My caregiver, husband, love of my life, was right there. Every minute. Even when I insisted that I was ok to go by myself "this time", he insisted that I should not have to do this alone. When we were newlyweds, 30 yrs ago, I use to tell him " I don't NEED you, I like having you around, but don't think I can't get by without you." Well, times have changed. I don't know what I would do without this man in my life. Thank God for the caregivers.

Sent by Theresa Lovin | 8:36 AM | 7-9-2008

Leroy, I remember days that were much like you and Laurie describe in this entry. They were incredibly difficult, but there was another side to it too. It somehow seemed like this amazing privilege to experience the heightened pure love of those days, with everything but love, pain, and small comforts stripped away. I wouldn't wish it on any couple, but the intensity of love in those days was a gift I'll never forget.
Settling into a certain peace about the transition from life to life that was ahead for John was a comfort for us both. I told him that he would go straight from my hands to God's and I believe he did. On his last day, he awoke from a semi-coma to say clearly to me that God was helping him and that he needed me to know that. It was a moment that just can't be described.
I hope that there are gifts during your most difficult days that help to sustain you. Your lives and your story have been amazing gifts to us. Thank you for daring to share.

Sent by Laura | 8:39 AM | 7-9-2008

To my husband: "Thank You" just doesn't seem enough, you are my "life giver". Your broad shoulders carry so much it takes my breath away.
Laurie, thank you for your beautiful words. You are a treasure.
Much love,
Debra

Sent by Debra in New Hampshire | 8:45 AM | 7-9-2008

Dear Laurie and Leroy,
It is so so difficult to tell you anything that you have not heard before or don't know. Leroy, I hate what you are going through. It is not fair or right. Laurie, you are not a saint, you are person who is suffering in your own way watching the man you love suffer. May G-d give both of you strength and as always much prayers and love go out to you. AND I HAVE SET MY STATION TO NPR FOR TODAY!
Jan

Sent by Janice Goldberg White | 8:55 AM | 7-9-2008

Laurie -

My life as a "life giver" ended on April 11, 2008 after 3+ years in the role. Admittedly, it was cyclical, with some blessedly normal months in which I was able to be "just" a wife and mother, and the only wage earner. May you return to that state soon.

Now I'm in a kind of empty nest place, where my husband and that structure and purpose are gone. While I have free time again, and can read detective novels for long spells, take vacation days that are actually that and not day long chemo jaunts, buy a foolish pair of shoes, and cook whatever I want etc. I'd trade it all for my old life, limited though it was, impoverishing though it was. I have always been a careerist, but to my suprise, those goals pale in resonance compared to caring for my husband and having him here.

Sent by Teri | 8:57 AM | 7-9-2008

This is to Deborah in New Hampshire. Take care and just put one foot in front of the next and go. I cannot imagine the Hell that you are going through and just wondering WHY ME and WHY IS THIS HAPPENING. Take care and G-d bless you.
Jan

Sent by Janice Goldberg White | 9:01 AM | 7-9-2008

Thank you Laurie. I felt truly blessed to be able to care for our son. There was no where else I felt complete. I am sure you know what I mean.

Take care and God bless you both.

Judy

Sent by Judy Voller | 9:18 AM | 7-9-2008

I remember the "sleeping with one ear and eye open". Tom could not longer sleep in our bed and slept in the recliner at night. The walk down the hall in the morning for me was the longest walk ever. I was so afraid to turn into the living room - afraid that he might have left me during the night and afraid of what I might find. I was so tired out in the end - but ya know what? I would do it all over again just to have one minute back with him. I was a caregiver - lifegiver - and I would do it again. Leroy you know that you would do the same for Laurie as she is doing for you now. I am sure she is living the life that she wants to live because she is living it with you.

Sent by Deb from Michigan | 9:32 AM | 7-9-2008

Laurie, I'm glad you are there for Leroy! A few months before my Dad was diagnosed with stage 4 cancer, I lost a much loved dog to liver cancer. I cared for him at home and he died in my arms. I grieved to the depths of my being. My Dad said, "Linda, your Mom and I would take some of that hurt off of you, if only we could." He said, "Saying goodbye is the hardest thing we're called upon to do in this world." And it is. God be with you and give you strength, Laurie!

Sent by Linda Lee | 9:32 AM | 7-9-2008

Leroy, Betcha she prefers being at your side rather than anywhere else.

Sent by Irene | 9:34 AM | 7-9-2008

Laurie,
Beaautfiully written. It gladdens my heart to know Leroy has you. God Bless you both.
I will be listening today too!

Sent by cv | 9:35 AM | 7-9-2008

Laurie, Thank you for your beautiful thoughts, and your beautiful new term. Our life-givers truly do sustain us.

Like others, I will also be at work today. However, I'm lucky to have a single office and found an NPR station, broadcasting both hours of ToTN, with streaming audio (WNAN in Nantucket). I can listen to part of the program, when I am not in a darned meeting.

Sent by Sheara | 9:36 AM | 7-9-2008

Laurie, by being a caregiver, you're giving both yourself and Leroy the best gift you'll ever give. Your time as a lifegiver will be frustrating, sad, lonely, tiring, happy, funny and peaceful. All that and even more. After it's all over, you'll look back and see that you learned and that most of all, caregiving was the journey to begin your healing from the loss.

Bless you for loving your man, bless you for having the patience and the strength to see it through with him. You'll never regret doing so.

Sent by Joyce in FL | 9:41 AM | 7-9-2008

Laurie and Leroy,
As always, you have the right words at the most difficult time. Thank you.

Though I am cancer-free at the moment, one of the "gifts" of a compromised immune system from treatment is that I get every stupid germ that comes down the pike. Last month, bronchitis and asthma and this week, shingles. So, just when my husband gets his life back, he gets thrust into the role of caregiver again.
I feel so lucky to have his care and love.

And Leroy and Laurie, you are so lucky to have one another. Your words move me every morning.

Sent by Robin | 9:47 AM | 7-9-2008

Laurie,
Thanks for sharing your thoughts here. I think of you every time I write to the blog as I know you are right there, either literally or figuratively, next to Leroy.

Take good care!

Sent by betsey in albany ny | 9:54 AM | 7-9-2008

Dear Laurie,
May God bless you. My brother and I were care-takers for my Dad who passed from complications of Parkinson's and pulmonary complications. I truly understand what you mean about "making their day." We tried so hard to make "normal" for our Dad what the disease had taken away. Hugs and prayers to you and Leroy.

Sent by Donna Green | 9:55 AM | 7-9-2008

As "lifegivers" we hear that we need to take care of ourselves, too, and take a break from the giving. But time is too short and we don't want to miss a moment of that time we our loved ones. It is not a choice, because it is what we lifegivers do. Thank you, Laurie and Leroy, and know that many, many people are given fuller lives because of you.

Sent by Susan in the beautiful mountains of Colorado | 10:01 AM | 7-9-2008

Laurie,

Thank you for sharing with us what a caregiver sacrifices. i learn so much from you as from Leroy. Isn't it a wonderful giving opportunity when we give up so much for the one we love? God bless you both.

Sent by helen miao | 10:03 AM | 7-9-2008

Good morning all.
I am moved. Thank you Laurie. I know your battle.

Leroy, you are a lucky man to know real, unwavering, and unconditional love! Not many of us have experienced that. I know I have, but she's gone now. Remember, Laurie needs this time with you as well. The things you share and say to her now are the memories that she will remember the most. I know this from experience. So say all those things you need and want to say and live the day!

I wish I could do more for you Leroy because you've done so much for me! Thank you.

Sending positive energy your way!

Sent by Michael (Lifegiver Survivor) | 10:21 AM | 7-9-2008

Leroy and Laurie

Laurie's words propelled me back 21 years to the days when my husband was dying of prostate cancer. Her words are true. One of the bloggers wrote true words as well - bet she'd rather be there than anywhere. ALSO true - we all wish we could be somewhere else. Cancer world is not logical!

Blessings to both of you in this hard time.

Sent by Diana Kitch | 10:49 AM | 7-9-2008

Leroy and Laurie

Thank you...that's really all I can muster up today...too many tears. I always get a "reality check" when I get to read the blog every morning; I just need to quit my sappy blah-blah poor pitiful me and GET ON WITH LIVING!!! It's just hard somedays and unfortunately, I've been in this funk for a week. My thoughts and prayers are with you both! Hugs and love to you both!

tess from KY

Sent by Tess from KY | 11:08 AM | 7-9-2008

You brought tears to my eyes. God bless you both. I like the new term "life givers".
Charlotte in Rural Ridge, PA

Sent by Charlotte Kewish | 11:16 AM | 7-9-2008

You are so blessed to have a caregiver. Many thousands of people with cancer do not have caregivers. There are many single people, divorced people, widows and widowers, etc. who live alone and must travel these roads alone. So be grateful you have each other. It's a wonderful gift. My prayers are with you.

Sent by Nancy | 11:20 AM | 7-9-2008

What ever word we use for the role, it is not one you can prepare for. And neither is the role of the cancer ridden. There is just no way, much as we want to do so, (and I have been over my head in both roles) that we can fully appreciate the opposite role. I do know that I was so glad that I was able to be fully involved with the "life extending" role for my own husband while he lived before I was forced into my own cancer role. I would a lot rather be still so fully involved with the precious role of helping him. His life was so much more important to me. It is really his spirit and will that keeps me down here fighting my own battles now. In the long run Laurie just wants you to know you are loved, Leroy. It is the love that will keep you both enriched. Maybe the word ought to be "love-giver".

Sent by Lucy Groh | 11:28 AM | 7-9-2008

Good morning Laurie,
I was my Mom's life-giver. When she was very ill she amazed me with her strength. But during that time, I also found my own strength. It was one of the hardest, but most rewarding things I've ever done. I frequently say thanks for having been blessed with such a wonderful mother, and I thank Grace for the look of gratitude and love I saw in her eyes every day. I love the new title, Laurie, and I think Grace would love it, too.

Sent by Sharon | 11:29 AM | 7-9-2008

Dearest Leroy
It is not the life she "has" to lead it is the life she "wants" to lead. She obviously loves you very much, and when you love someone you will do anything for them. I gave up my life here in the USA for a short while to go back to Scotland to care for my sister. I did it because I loved her, she was my everything and I would have done anything she asked of me. Love rocks, but then you know that.

Sent by fay from Gilbert AZ | 11:30 AM | 7-9-2008

Here I am, another echo....

But, really, what else would we do, where else would we be? As a cancer patient and a caregiver, it's another day of living our lives. I wouldn't have traded a moment of caring for my mom and my husband wouldn't trade a moment of caring for me.

So Laurie, keep on living your life with Leroy. You know every day is a gift to be cherished :o)

Sent by Teri Thomas | 11:38 AM | 7-9-2008

Laurie,

Beautiful words today-and so true. As I've said before, I never thought that after 25 years together there was anything more to learn about each other. But when the last layers of Pat's ultimate individual privacy started being stripped away, we both encountered a new and different honor and respect for each other. We attained a deeper intimacy that comes with trust and caring. As much as I wish we had never entered Cancer world, I wouldn't give up one moment of the last 22 months that I shared with Pat.

As for the sleep, I've had plenty of time to make up for it. There are sleepless nights now but for different reasons. Giving up that life, giving up the comfort of his deep breathing next to me--that's the hard part now.

I like what Michael called himself--Lifegiver Survivor. I think I have to take that on as my moniker. It makes me sound stronger than I feel sometimes.

I'll be listening today, Leroy. Laurie, do something nice for yourself.

Kathy B. from Michigan

Sent by Kathy B. from Michigan | 11:44 AM | 7-9-2008

Thank you Laurie and Leroy...words cannot express...you both are wonderfully important for sharing your lives with us.
May the both of you enjoy the day.

Sent by Carolyn | 11:45 AM | 7-9-2008

Dear Leroy and Laurie,

"Life giver" ... Oh yes. There's a lovely and true resonance in that term. Hyper-alertness, hyper-awareness, hyper-vigilance, hyper-sensitivity to the other's needs and nuances, 24/7 ... These are gifts both to the "giver" and the "receiver". While exhaustion and sadness are givens on both sides of the equation, this is also a time of distilled love and sparkling clarity of what's most important.

Tender loving care to both of you, today and every day,

Kim Forester

Sent by Kim Forester | 11:50 AM | 7-9-2008

Thanks Laurie,
My son who passed after his 9 month fight told me many times that his burden was lightened when ever I could be with him during his illness, I felt the same way. Not only does caregiving take precidence over everything but it is miraculous how friends, family and even strangers rise to the ocasion from a support standpoint. My life has changed since our son has gone in many ways. Besides the obvious of missing my son, I miss the feeling of endless shared love and support that seems to accompany patients, caregivers and any one that enters the lives of patients and caregivers. It's been ten month's since my son has passed, the empty feeling and heavy heart are still there. Most of the people around me seem to have resorted back to their ways. I certainly don't want to give the impression that their should be any special treatment, I just miss the loving tendencies and wonder why a tradgidy has to take place in many cases for folks to be truely considerate of others. God bless you and Leroy! Your shared experiences and points of view have been of great assistance to my wife and I. Do you have a favorite pizza place? My son and I could forget about the cancer world when we enjoyed our favorite pizza together.

Sent by Ted Voller | 11:56 AM | 7-9-2008

Laurie:

I feel for where you and the other life givers are today. There were times when I said "I just want my life back" but in that statement I also meant "WE just want our Lives back".

Unfortunately, that life will never be back as it was BC.

I find, almost a year later, that I have forgotten most of the "iky" things that happened in caring for Burge. He always apologized as I cleaned his wound, emptied his "bags", etc. but none of that worried me at the time and I don't recall the details now...only that I was giving care to the one I loved.

I have managed to fill my life since with lots of work, but as the days pass, and the work is complete, I find the lonely side coming through. If it weren't for the pain Burge had, I almost long for the chance to care for him again...hold his hand, talk about his dreams. I have to remember that he is free of that need now and I need to move on...but it is oh so hard.

My thoughts are with you today, Laurie, and for the other life givers like us. Thank God Leroy has someone like you in his life.

Nikki

Sent by Nikki in Kansas | 12:32 PM | 7-9-2008

Leroy and Laurie, The Life Giver part is, I think, harder than being the patient. As a patient we struggle with treatments, scans, loss of strenght, the loss of who you are, etc. I like Leroy has to be there, the Life Givers don't. I know you and my wife would never consider this, but many can't deal with it. They leave the patient to deal with it on his or her own. Seems far fetched to those who would never walk away from a commitment, but it happens.

We are all so lucky to have a Life Giver to help us through. It would be impossible to deal wtih otherwise. Laurie you're the best!!

Hope the program is not too much for Leroy, I know I am looking forward to it.

Thoughts, Stan

Sent by Stan Wozniak | 12:39 PM | 7-9-2008

What beautiful, heartbreaking, true words, Laurie. I sometimes feel I don't do enough because I want to take the cancer away from David and I can't.

Sent by Tina from Alton IL | 12:40 PM | 7-9-2008

Thank you, everyone, for sharing your experiences.

Laura put the perfect words to my feelings when she said, "It somehow seemed like this amazing privilege to experience the heightened pure love of those days, with everything but love, pain, and small comforts stripped away."

The intimacy of caring for my sister brought me to a place of love I couldn't have imagined and the memories remain precious.

Bless you, Laurie and Leroy, for this sharing place....

Sent by Brenda | 1:37 PM | 7-9-2008

As a physician assistant I previously worked in Nephrology/kidneys, primarily with patients on hemodialysis. Each year we would loose about 20% of our patients to a variety of physical ailments, not to mention the patients within the hospital setting that were too far gone even for dialysis. I encountered and dealt with a lot of death over the nine years I worked in that field of medicine. I've told the following story many many times to both patients and their families because it has had such a deep and personal meaning for myself and provides a sense of hope and support during very difficult times. I've never written this story down, but here it is:

In my previous work as a paramedic I worked with a woman, also a paramedic, who had a pair of hips that were very wide, especially when compared to the rest of her body. The other male paramedics would, in their course insensitive manner, make fun of her hips in a variety of ways and never once did I ever see her respond in anything other than the brightest and most happy manner you can imagine. I was often puzzled by how easily she took their comments in her stride.
Working with her one day I asked her how she could so easily shake off their comments without so much as a single moment's concern or anger. In response she told me the following story:

"You've never been anything other than nice and kind to me Dave so I'm going to share something with you I don't ordinarily share. You wouldn't know it to look at me, but I'm a severe asthmatic and several years ago I had a horrible asthma attack. I made it to the Emergency Department and they did everything they could to help restore my breath, but I didn't make it. I died on the table. It was just like you've probably read. I hovered above myself and saw them working on me. I was taking the most beautiful breaths I had ever experienced. Then there was the tunnel and the bright clear light and I felt myself swept along into the tunnel.
My parents both died when I was young and I was raised by my grandmother. She died several years ago, as well. So, who should I encounter within the tunnel but my grandmother. We embraced and I felt so happy to see her once again. I wanted to stay with her forever, but after a few moments she stretched me out to arms length and told me I couldn't stay. I protested and asked her why to which she replied, "You can't stay because you don't have enough jewels in your crown yet." At that moment I felt myself jerked backwards and slammed back into my body. They had just applied the paddles, shocked my heart, and brought me back to life.
I recovered of course and I've never had such a severe asthma attack since. I don't concern myself with the course crude nature of this world anymore because I've experienced first-hand what it is to die and what I can expect when my time comes once again. I have absolutely no fear what-so-ever of dying and, to this day, I continue to be filled with the warmth and joy I experienced on the day I died. Nothing those guys can say or do is going to ever put a dent in what I have in my heart."

Time and again I've turned to this story as a source of comfort, for myself and others. My friend's experience is evidently nothing unique according to the literature concerning near death experiences. There are those that will tell you that this is just the random sparkings of a dying brain and you know what, they're absolutely right! But, I'll tell you a secret; something they completely fail to understand or acknowledge. Yes, the brain dies and yes, there are random sensations and experiences that go with a dying brain. But these are not an end in themselves, but are only a transition point to the greater experience, that of a spiritual movement into a high plane of awareness and experience.
When you go, go with God.

Sent by David A. Johnson, PA-C | 1:40 PM | 7-9-2008

In the past ten years I have been by sister's side during her kick ass session with breast cancer, had my father die in my arms from prostate cancer, and traveled the world for treatment with my brother for pancreatic cancer. There is absolutely no place on earth that I would rather be than with my loved ones during these challenging times. Yesterday my brother's wife was diagnosed with breast cancer. I head up to Anchorage on Tuesday to help out. Wild horses couldn't keep me away. We are all in this together.

Sent by Penny Coeur d'Alene, Idaho | 2:28 PM | 7-9-2008

The message seems to be that those who are strong, courageous, or optimistic can defeat the disease. I'm sure this is correct, but I think the danger is that those who lose the battle might be seen as weak. Is this true?

Sent by Claire | 2:44 PM | 7-9-2008

My wife Elaine died last August 1 - and I remember how draining the last few months were caring for her day and night. In looking back I find they were the hardest, yet most fulfilling days and nights of my life. Even near the end when she could no longer eat, drink, speak, or open her eyes...I feel honored to of been given the time to be with her. To the life givers out there now...you are angels on earth and love manifested in human form. Stand proud.

Sent by Russ | 3:02 PM | 7-9-2008

Wow Leroy. This live chat is brutal. You have incredible strength to be able to take these questions. One comment on Ted K calling you a role model... You shouldn't feel strange about this label. You put words and a voice to the 'unspeakables' of cancer. That, in my opinion, is heroic. Please don't sell yourself short.

Sent by Kelly George | 4:12 PM | 7-9-2008

Thanks Laurie.
I also am a caregiver of a stage four colon cancer 09/20/06 (50 yrs old), mets to liver. Since then there has been the colon resection, the liver resection, 26 intense chemo sessions and recently Theraspheres to liver at Hopkins. I found this quote and I read it everyday.

"Nothing is so strong as gentleness. Nothing is so gentle as real strength."

My thoughts are with both of you.
Kathy
Jefferson, MD

Sent by Kathy | 4:15 PM | 7-9-2008

I'm Tom's Cindy and I cannot tell you how much his care and life-giving have meant to me over our last 30+ years and especially the last 12....I do know that in my eyes it is much easier to be the patient than the lifegiver. I KNOW how I feel, I know when I hurt, etc. he just doesn't and he is always trying to be supportive and watching me is so difficult. I love him so much and I am so glad that you guys have each other.

Sent by cindy | 4:32 PM | 7-9-2008

Life Giver. The name brought tears. I was Burnie's life giver nine years ago. Like others who posted, it was something I would never change as hard as it was sometimes. I remember one night when neither of us could sleep (he had to sleep sitting up to breathe- lung cancer) and the fear took over and I just started shaking uncontrollably. Acceptance came later.
Love gives remarkable strength.

Sent by Nancy | 5:00 PM | 7-9-2008

Laurie
You said it perfectly. Life givers. I was a life giver. My husband, Bill, left this world back in April from the dreaded cancer. You are among many of us who give all they have to those we love. God bless you.

Sent by Laurie B | 5:18 PM | 7-9-2008

I remember so well when I learned what mature love is. I was in my 3o's and an ICU nurse. I watched an old man visit his dying elderly wife and he always held and stroked her hand while saying, through tears, "I love you so much, you are so beautiful and the best thing that ever happened to me. I love you, you are so beautiful". She certainly wasn't physically beautiful at this stage of her illness but he saw what the rest of us couldn't see. I realized then that mature love isn't about youth, vigor, good looks, good cemistry, fun times, etc. I hope that my husband or I(whose ever lot it falls to) will be a loving caretaker. I want to be a "lifegiver" during our healthy middleage...as in give meaning to our life. I'm so glad that Leroy has you to give meaning to his. Thank you from us.

Sent by Susan | 5:28 PM | 7-9-2008

thank you, laurie and leroy. i am one of the many people who follow your incredible story through this blog and i so appreciate your sharing of it. i was a double-bone marrow transplant patient 15 years ago and my parents (most especially my mom) were my caregivers. there's no way that i can understand what they went through and there's no way that i can ever pay back what they've done for me. i just accept that each part of this incredible story is a complementary journey and i am profoundly grateful. thank you and blessings to you both and to the rest of your families and friends...

Sent by judithellen larson | 6:52 PM | 7-9-2008

Laurie, yes, emphasize LIFE. The smallest resemblance of everyday life is always cherished by us cancer patients. I hope you and Leroy have those snippets of everyday life, some humor mixed in with the lousy aspects of this disease.

Sent by Dorothy - Los Angeles | 8:27 PM | 7-9-2008

I missed the live webcast, and TOTN today (stuck at work), but just had a chance to listen to it online. Leroy, your modesty regarding this essential service you've selflessly offered to the rest of us in Cancer World is just another facet of your being a living gift to us all.

Sent by Mike Armstrong | 9:21 PM | 7-9-2008

Laurie,
Thanks so much for your thoughts today. Leroy, I can assure you that she is right where she WANTS to be.
Deb, like your husband, mine had to spend so many of our last nights together in the recliner. I remember drifting into sleep and jerking awake when I didn't hear him coughing, getting up to check on him.
Now, 15 months later, I still long to hear his cough. But, like Nikki, I really wouldn't bring Leon back to this world to suffer through it again. I just remind him (yes, I talk to him) to save a seat for me beside him in Heaven.
Tina and Kathy B, thoughts and prayers to you. Kathy, as I look back now, I seem to think that all of my 37 years married to Leon were perfect. Funny how you can forget the bad times.

Leon's Life-Giver,
Jane

Sent by Jane | 9:47 PM | 7-9-2008

I can so relate. Thank you Laurie. Take care

Sent by Fern Malowitz | 10:10 PM | 7-9-2008

Dear Laurie,

Thank you and all the "life givers" As I make this journey thru the stage IV cancer world, I am grateful every day for my wonderful husband. I feel guilty when I can not do the things I could BC. Sometimes I feel like I am not carrying my share of the load. And I often feel like I have it easy--I will be the one to leave and not have to stay and pick up all the pieces....So thank God for all the life givers. We could not do it without you

Sent by mary c. | 10:20 PM | 7-9-2008

One of the reasons I am so drawn to this blog is that in another time and place, I was a "caregiver." I remember bawling in the shower (so no one could hear me) because I just didn't know what to do. It was very frightening at times. There was no "My Cancer" to help me. My husband did recover, thank goodness. But I am very aware that I could be back at that same place without any warning. Thank you, Leroy and Laurie, for your precious gift of sharing.

Sent by N. Holmes | 10:40 PM | 7-9-2008

Laurie, my dear Philip died back in 1989 (Hodgkins Lymphoma), and I still remember the hand holding, the card playing, our music days when he did not have the strength to do much else but listen, our laughter together, our doctor days, our ICU days, our times together. And even after all of these years, I wouldn't have traded one moment of our life together, not one. It was beautiful and painful and precious and tender and generous and ... it was our life. Sending all good wishes your way. You are a special couple.

Sent by ann | 10:58 PM | 7-9-2008

Thank you Laurie - your post today reminds me to see more deeply, the constant effects of my family's life-giving efforts on my behalf.

Thanks to you both for speaking out.

Sent by Joan S. | 3:06 AM | 7-10-2008

Thank you to Laurie, and to Colleen, who recommended this blog to me. While I am her "mentor", I accept this advice from her gladly.

I am a lifegiver to a stage IV angel with brain cancer. Each day is a new opportunity to make him smile, and for him to remind me of the million reasons I married him.

Strength to all, and I know I will receive strength from all of you.

Sent by pam | 7:11 PM | 7-10-2008

What courage - diagnosed with stage 4 kidney cancer and living with mets and medication - the thought about how it will end and how will I manage have been uppermost in my mind. I have been the lifegiver caregiver whatever and I know he will do his level best for me. You in just a couple days have made me realize that I must enjoy every moment and that there will be strength and understanding people through each stage of this journey. Even if it's only on-line. This is the first support I've found and I pray for you now. Thanks.

Sent by Christine | 7:49 PM | 7-10-2008

Hi Laurie, Thanks for the comment about sleep. It's been 6 months since Bob passed away and I still don't sleep soundly. I had not realized what was causing it, but when I read your post it all clicked into place for me. I had been sleeping exactly like you said for so long, with one eye open, that it just became a habit. I guess habits are hard to break.

Thanks, Carol T.

Sent by Carol Tureaud | 1:54 AM | 7-11-2008

Thank you, Laurie, for the words that define us all. I have been a life giver for six months now, and my beautiful daughter is now able to care for her two year old without constant help. However, cancer changes us all. I have given life to Christy, my daugher, and have given stability to Dylan, my granddaughter. My hope and prayer is that both will be able to live a normal life. That we do not know.

Sent by Miriam Freiter | 4:02 PM | 7-14-2008

I know. Laurie, I know.
But since I couldn`t have my darling back as he was, I just loved him as hard as I could for each day that he was still with me.
I remain sending you and your darling, Leroy, strength and courage.
K Frahm, WA

Sent by K. Frahm | 6:41 PM | 7-14-2008

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