Dear Leroy,
Leroy, you will never die. Not in the minds and hearts of all of us here. Maybe your body is broken but your spirit is already inside of us all. After 13 months, my husband is on his 5th Chemo protocol. So far, the tumors continue to grow. When treatment becomes too much, we will put in a call to Hospice. In some ways, it will offer more support to us than we have gotten so far. My heart goes out to Laurie. I am living her nightmare too. Stay strong!

Sent by Elaine | 7:56 AM ET | 01-23-2008

Leroy,

I think we get caught up many times in this struggle and lose ourselves to the cancer. We start actually ???living??? for the cancer, instead of living for ourselves and the people who love us. We end up spending our last days in a battle we can???t win.

For many of us there comes a time when we need to turn our back on the cancer and devote the time we have left to the people we care most about, not the thing we hate...cancer.

We all tend to give cancer human traits. We battle cancer, kill cancer, hate cancer, etc. It makes us feel empowered, more able to deal with this faceless, emotionless killer if we give this foe a personality.

Given that perspective, perhaps at this stage in your battle, the most hurtful thing you can do to the cancer is to become indifferent to it. Nothing hurts more than to be on the receiving end of indifference. Indifference is the best revenge.

Take care.

Sent by Tom | 7:59 AM ET | 01-23-2008

Oh boy, you are right about that... no one wants to talk about their death or that of someone close to them.

Two years ago, as my "rat wheel" existence was just taking off. I was trying to somehow get ahead and plan for what I thought was the inevitable, my sister's death. I talked to a home health aid outfit about services they provide including hospice. The owner was surprised I would do that, however, information on services for potential need is good and lessens the stress if and when it IS needed.

So, talk and ask questions before need. It does NOT mean your end is around the corner.

Sent by Sue Chap | 8:01 AM ET | 01-23-2008

Oh Leroy ah geez Leroy who wouldn't be nervous. Even this you handle with such honesty and clarity. I can't help but want to send you this biggest hug ever today. I will be thinking of you all day as you ask those tough questions and grapple with those tough answers.

Sent by JMoyer | 8:06 AM ET | 01-23-2008

Will be thinking of you today. My prayers are with you.

Sent by Jen | 8:09 AM ET | 01-23-2008

I just went through the hospice experience with the death of my mother Stella, 95. She was not a cancer patient, though I am. The primary aims are the comfort of the patient and reducing the workload of family members in terminal care.
I was favorably impressed. Do an internet search on the history of hospice for more information.

Sent by Jack Burrington | 8:12 AM ET | 01-23-2008

I think it is an excellent idea. Perhaps they can offer some assistance now that would make you life a bit easier. From everything I've read, hospice is a wonderful caring organization.

I share your nervousness....but being well informed will help remove any doubt for possible future use even if they don't have anything to offer at this moment.

Prayers as always....

Sent by Al Cato | 8:16 AM ET | 01-23-2008

Dear Leroy,
Indeed go and visit the hospice, and it is only what it is ............a visit to discuss what we all are going to face. You are so right....it is the last thing we want to talk about, but I heard someone say last night on TV, that living is what is hard, not dying......I am going with that
thought. Still we have today....while it may be fraught with worry in the backs of our mind, or any number of concerns.....we have to remember and focus that we have been given yet another day.
Blessings.
Wanda Amorose

Sent by Wanda Amorose | 8:16 AM ET | 01-23-2008

Leroy -

Dying is scary. I've been afraid of it since I was a little kid and first discovered that life ends.
When I was in college, my father died of leukemia. It was devastating. Hospice was not involved in his care; in fact, I didn't even know what hospice was until about 10 years later. Then, about 5 years ago, I became a hospice volunteer.
I don't have any earth-shattering insights here. I wish I could say something that would help you and take away that fear you're feeling. What I can is that I'm so glad hospice is there to help you. They will change your life.

Sent by Elona | 8:27 AM ET | 01-23-2008

Leroy - I totally understand your nervous feelings regarding this.....but, truly from what I know and have experienced directly....hospice is about helping you plan to live........
Maybe not a plan for how to live longer - but how to truly live the way you want every single day!!! To plan for you to be pain free, comfortable and experiencing everything that you care about......
Did you see Art Buchwald's recent book Too Soon To Say Goodbye -about his hospice experience?? Although, that will be nothing like yours, it was bright, heartwarming and funny. He was enjoying his life so much and having fun that people were joking that he was "faking it"..... ha ha
You have such an open heart and mind - and I hope that your meeting brings you some peace, ideas, and in no way conveys that your death is imminent - I view it that your vibrant life is what you are planning for!
Hugs and peace to you and Laurie.....thanks for sharing your heart in such a candid and real way - you're amazing!

Sent by Ruth Chermok | 8:39 AM ET | 01-23-2008

I have been following your courageous journey for quite some time. I just want to say that choosing hospice is also an act of courage, not of defeat. It means you've chosen to allow others to honor you with their compassion. Hospice workers are the most caring people I've ever met. They don't treat you as a disease; they treat you as a person with dignity and worth. Theirs is a ministry of presence. God bless you.

Sent by Cindy Wheatley | 8:44 AM ET | 01-23-2008

Leroy and all, I remember the day we went to hospice to talk to them about Neil. I took pictures and it was a beautiful place. The staff was there to offer love and support. It's a special gift of those who give of themselves the way they do. Just like you, you are a gift to us.
Most days, I don't want to get out of bed, find a job or even figure out what I want to do with my life. I just know I have to move forward and find my opportunities, as hard as that is. I hope and pray you have the courage to face your tomorrows. You are not alone! This blog helps me to move forward, gives me strength, hope and courage to face my tomorrows! I know I am not alone....

Sent by Laurie Hirth | 8:49 AM ET | 01-23-2008

But, Leroy, talking about your death gets the discussion out of the way. Hopefully it will help you and Laurie begin the discussion about each of your deaths. Even with hospice we got to the end of my daughter's life without having had some important discussions about death; she was unable to express herself fully so just had to ask yes and no questions and hope our care met her every need. I am grateful for your continued openness with all of your family here at My Cancer. Your daily posts continue to be an important part of my day.

Sent by Eleanor Workman | 8:54 AM ET | 01-23-2008

Be brave, Leroy. If nothing else, being a patient of Hospice helps with the paperwork at the end...whenever it comes. It keeps your loved ones from having to involve the police as your death is a "known" happening and doesn't have to be investigated.

It also isn't something you have to "stay in" but something you use as needed although there are certain "rules" about other types of care. We liked our Hospice nurse...who in our small town was also the home health nurse and a hospital nurse...and looked forward to having her stop to check on us even on good days.

The other great thing about the Hospice workers were their willingness to step back. They weren't "pushy" with their beliefs, but there to offer them if you ask. That lead to some interesting conversations for the sake of conversation.

It will be OK today.

Wishing you good luck.
Nikki

Sent by Nikki | 8:55 AM ET | 01-23-2008

Leroy,

My good friend was a hospice nurse until she had 4 kids. She helped patients a lot with pain meds and things between visits to the doctor. She often told the doctors what the patient needed and was a great advocate. Having another advocate is a good thing. One more person in your corner is a good.

Hugs and prayers,

Lori

Sent by Lori | 8:55 AM ET | 01-23-2008

Pre-planning...one of the hardest things I ever did was to have my will drawn up: once completed, the task made me feel better. Somehow I felt more in control of my today by taking care of tomorrow.

Learning about hospice is a proactive and positive step.

Peggy

Sent by Peggy | 9:03 AM ET | 01-23-2008

Ahhh..Hospice was soo good to us during my Dad's last 8 months. Getting them involved with us sooner rather than later allowed us to develop a very special and intimate relationship with Dad's caregivers so that, at the end of his life, we were supported by friends who knew what to do to help us physically care for Dad and how to emotionally help us. Our experience was very positive and I hope yours will be too. Art Buchwald's book was wonderful.....gave us good vibes. Good luck to you and Laurie, and may you find peace and comfort in each other.

Sent by Karen | 9:07 AM ET | 01-23-2008

Leroy, I have a huge support system and a great family but when I was diagnosed I realized I needed someone who was there and could handle all the scary things I needed to talk about. I started seeing a therapist who had worked for hospice. I can't tell you how helpful it has been. He encouraged me to get a second opinion and I know that has prolonged my life. There are times when our sessions are filled with laughter and political discussions but I can still "go there" talk about my concerns about the end and how I want things handled. It keeps me from further depressing my friends and family but is comforting to me.

I had my RFA on Friday and they were able to get one of the two liver tumors. Now, as I always say, "it only takes one to kill you." The liver surgeon said we have some options but wouldn't discuss them until I came to the office. I'm not sure what that means. Anyway, I am running out of options. I am interested in how others have handled this and would be interested in hearing from folks here.

Sent by Dona | 9:10 AM ET | 01-23-2008

I identify with the nervousness and even the reluctance to take a step like this. I was at my Dr's last week for a ck up and saw a hospice brochure at the reception desk as I was checking out. I picked it up, leafed through it but then I put it back, telling myself, "You don't need this yet." But still in the back of my mind, I know it would be good to be prepared and informed.

Thinking of you and praying for you and yours Leroy.

Sent by Vicky (NY) | 9:14 AM ET | 01-23-2008

LeRoy - I remember all to well when the doctor advised my husband and I that he was contacting Hospice for us. I thought it meant that Tom was at the end of his life. I thought the worse but it was not that way. They were very helpful. The first visit was just for information - kind of get to know you type visit. I learned then that just because Hospice was coming into your home did not mean that the end was near. They were there to help in alot of ways other than just dying. Yes, we did talk about death and dying but it was not the "main" topic. Looking back - I would have called them sooner had I known that they could help out so much. Hospice is NOT just about death -it is about life too. It is for the patient as well as the family and caregiver. One can continue to search for treatments and to have treatment. I am so thankful to Hospice for all they did for me and for my family. You will be too.

Sent by Deb from Michigan | 9:16 AM ET | 01-23-2008

Best thoughts today. It totally makes sense that you would be nervous about this, but...you're no closer to death for talking to them. All you'll be is the same guy with the same disease, just better informed. It's like weighing yourself -- you don't gain any weight by finding out what you weigh, but it sure feels like you do.

I completely can see how it would be very upsetting, but nothing will change from the visit except an expansion of your options. The whole point, I'd think, is to get this information before you need it instead of when you need it, and that seems to be what you're doing.

Best of luck; know that many of us are thinking of you.

Sent by Linda | 9:17 AM ET | 01-23-2008

Peace be with you at this time Leroy. I don't know what else to say.

God Bless you.

Judy

Sent by Judy Voller | 9:19 AM ET | 01-23-2008

After my diagnosis, we asked a good friend to provide us with some books about death, funerals, etc. I remember that she put the books into a gift bag, and tied the handles in a knot, saying she didn't want our 10-yr-old son to see them. Smart. But that bag sat on our bedroom floor for months and months. I just couldn't bring myself to open it. Then I finally just took it back to the friend, still tied in a knot. Sometimes you just don't want to know.

So it's a courageous thing you do. Just think of it as another journalistic assignment -- getting some background for a story you're doing on hospice. Maybe that will make it feel easier?

Sent by jordis | 9:26 AM ET | 01-23-2008

Leroy, set your sights higher. A hospice
would scare the stuffing out of me too.
But, I think its a good idea to talk. If nothing else, you will have the knowledge of what they can do for YOU.
May God continue to bless you. Your strength is what helps keep me going.
Thank you for your conviction, and strength

Sent by Peter in Colorado | 9:29 AM ET | 01-23-2008

Leroy,
I think people are exploring hospice services earlier and earlier, so just making the contact by no means is a pronouncement. They offer a range of services some which may actually make your life easier, but a good hospice will tailor their services to meet your needs. Maybe you will choose to only meet them, but not use their services at all, but if you do, it doesn't have to be permanent. If your health makes an upswing and services are no longer needed, you can leave hospice, too. Just to let you know, it's not a final decision by any means.

Sent by Leah | 9:31 AM ET | 01-23-2008

Everything will be all right Leroy. You'll see. Do like I do when things seem to be really bad, live one hour at a time... and pretend that you are Doris from Finding Nemo.
Take care
Elsa

Sent by Elsa Dias | 9:36 AM ET | 01-23-2008

You ARE amazing!! Thank you, my friend. I hope you feel us beside you on this journey.

Sent by Anita Solomon | 9:38 AM ET | 01-23-2008

What a wonderful and self-loving step to take! I have been humbled, moved, awed and changed by the hospice nurses I have seen in action. They have been wizards and advocates at getting effective pain control, at being truly present, at listening and completely supporting my loved ones' personal goals for living their lives to the max. If I were younger, and more aptitudinally inclined in that direction, hospice nurse would be near the top of my "wannabe" list. They are great allies who have chosen a profession where caring can play out in real ways, all customized completely to what the individual at the center of it wants to have happen. And talking with them now allows you to know them and be known by them in the event you ever want to activate hospice. Of course, at least in Virginia, activating hospice means a change in status from actively treating the underlying condition of cancer, to palliative care, which is both a funding and a philosophical shift. But when/if that time arrives in your life, I can wish you no wiser, mores supportive, more gifted and present partners than hospice nurses. And if it is not for you, you are able to make that call too!

It may sound presumptuous, and I surely do not mean it that way, but I am really proud of you for arranging this meeting Leroy. It really IS a big thing, and being nervous just makes sense. But your being open to the meeting is a lovely thing that has my heart just singing for you today. You will know what is right for you as you go along. And hospice provides real support not just for the individual receiving direct supports, but also peace of mind for family at critical junctures, knowing there are specialists at the ready to assist with issues mere mortals have how to sort out. That is a gift to family as well in times of pain or uncertainty and not knowing how to assist the person they love to be at ease, in full control, and not in pain...

Sent by Sarah | 9:39 AM ET | 01-23-2008

Hello - stepping in from the fan club on the sideline to add a couple of cents - my father, who sustained a ton of health issues for a while (congestive heart failure, arthritis, and lung cancer on top of that) - finally engaged with hospice ... just so you know, he did eventually pass ... but i wanted to tell you that his hospice experience was pretty darn wonderful. he was a very "in the box" kind of guy - a (retired) engineer with a closet full of navy suits, white shirts, and wingtips. Hospice gave him permission, or reframed his situation with him somehow, to allow him to do things outside the rules - like moving his office (with his pet computer) from the basement to his room so he could break it and put it back together without the burden of stairs ... and rendering pretty much every day his birthday ... it was beautiful and touching - and from what I could tell - he got a kick out of it too. much love, Suzanne

Sent by suzanne | 9:41 AM ET | 01-23-2008

Hi Leroy,
There was a time I couldn't even say or think about the word death. Now I can, but I don't like it. Basically, it sucks. (As my grandsons would say!) I just had my 59th birthday. 20 years post breast cancer. But you know, I was very lucky. I read your comments everyday and my heart is with you. You are so courageous. I can't even imagine going through what you have been through. Thank you, thank you for giving all humans hope and giving of yourself to advance the treatments for cancer. As for death. None of us knows when it will come...........
With Love,

Sent by Lyn Banghart | 9:41 AM ET | 01-23-2008

I volunteer for the hospice program in my town. The theory is this: hospice helps people to live, not to die. It will help you make the most of your time, however much it may be. I believe in this strongly but I also realize that even though it sounds great, the decision must be a terrible one. My sister passed away in August at the age of 31 from melanoma and hospice was an issue that she struggled with for a long time. She didn't want to "give up" even though she knew that she could certainly benefit from the services that they offered. We like to label things and unfortunately, hospice has come to be associated with the end. If you do decide to go for it though, just remember that in your decision, you are choosing to live your life to the fullest with the help of hospice, not to give up and die. My thoughts are with you and your family.

Sent by Elizabeth | 9:44 AM ET | 01-23-2008

Hi Leroy,

Glad to hear from you day after day.

If you have access to more than one hospice organisation, and have the energy, I hope you will interview a couple of them at least. My experience with a friend who was dying a couple of years ago (in San Francisco) was that the quality of hospice care varies widely. She waited so long to connect with hospice that she and her family/friends had to take what we got, and it wasn't good. (And even within that hospice, the quality of nursing care varied dramatically.)

So I'm glad you're looking into it now, before you need it. I hope you can connect with an organisation or cadre of people you really respect and feel comforted by.

Sent by M Wms | 9:44 AM ET | 01-23-2008

Dear Leroy,
You remain in my prayers. I wonder if maybe the Hospice staff will be nervous to meet such a famous cancer patient as you have become. Try to discern what help they can give you and Laurie. I know this is hard, and wish there was something I could do to ease your fears through this. You have given us all so much.

Sent by Laura | 9:51 AM ET | 01-23-2008

I have nothing but good things to say about hospice. When Terry decided to stop treatment, we were immediately connected with hospice, who came to the house and worked with us there for as long as could be done. We had a nurse, an aide, a social worker, and if we had chosen we could have had a member of the clergy involved. It was only in the last week that Terry went to inpatient hospice and was started on sedation and pain meds 24/7. At home or inpatient, we couldn???t have found better, more compassionate people. Every single one.

They offered a year???s worth of followup and grief counseling to me, which in hindsight I should have probably taken them up on.

I didn???t find the entire experience peaceful or spiritual or powerful, as many do, but it did take much of the strain off both of us and allow us to concentrate more on spending Terry???s last five weeks together.

Sent by Bruce | 9:55 AM ET | 01-23-2008

Leroy, I have just caught up on your latest posts. Hospice seems like a marvelous thing except when it is about you. Treat it like a fact finding mission and then press on! You are just being prudent, smart and thoughtful by pursuing hospice information like having your will drawn up because you are being responsible. The "Fat lady hasn't sung yet!"

Sent by Pat Z. | 9:57 AM ET | 01-23-2008

Thanks for being so open and honest. For some men, thats really hard to do. But Hospice is a wonderful group and they will make your life better. And Laurie might need them more than you do. After you meet with them, go do something fun, have some drinks, and throw caution to the wind. Toast Laurie and the future. I have a feeling you'll be here awhile. Take care!

Sent by DiAnn | 10:09 AM ET | 01-23-2008

Leroy: you have lots of comments and mine might just be superfluous. However, I wanted to encourage you in your visit with the hospice nurses. They are awesome people! They can help you and as important, they can help your loved ones...especially Laurie (did I get her name right?). They are wizards at pain management - an issue that sounds like its critical to you.
Warm regards...Sandra Yudilevich

Sent by Sandra Yudilevich | 10:13 AM ET | 01-23-2008

Leroy, what you are doing is similar to the way my husband and I felt last year when we decided to meet with the Funeral Director about our final plans, when the end comes. No, it is not easy talking about the ends of our lives, but it comes to us all. We now feel so much better for having dealt with it.
Hospice is a wonderful service and will put your mind at ease as to a lot of your thought about cancer. We have had much experience with them with family and friends and they are great. Keep us updated on your thoughts after speaking with them, it should be interesting to hear your opinions and observations.
Just remember, you have far too many of us with you, hanging on to you for dear life and we shall not let you go!

Sent by J C R | 10:18 AM ET | 01-23-2008

Leroy, let me first commend you for the tremendous model for courage you have been for all of us. As for hospice, having had several experiencies with it, I would suggest that you will be talking, not so much about your death as, about how you will live the remainder of your life. Hospice staff know more about pain management than any doctor, clinic or hospital that I have come across. I am confident that they will enable you to live out your life in far more comfort and with better quality than you would otherwise. Again, you will be our model for courage. You go, guy!

Sent by Marlene | 10:19 AM ET | 01-23-2008

Dear Leroy,
Some years ago, I got a call from my friend, Margaret's family telling me she was on hospice and had a short time to live. When I visited her, she was confined to bed and on heavy pain meds.

A week went by and I was unable to get anyone at her home to pick up the phone. One day I answered mine and it was Margaret! "Pat, I've decided not to die...find me a doctor who'll give me some treatment!"

Margaret danced and sang and never missed a party for a good year. She died following surgery but there are lots of pictures of this crazy Southern belle proudly proving that no one really knows when the Margarets, the Leroys or the Pats will leave here.

There may be more dancing to do, Leroy! But hospice people are great to have around. They talk about real things and help you get all the end-of-life plans made so you and your family can get on with living!

Love and a shot of Margaret to you!
Pat

Sent by Pat McRee | 10:19 AM ET | 01-23-2008

Hi Leroy,
No, none of us want to speak of the inevitable. It appears that as humans, we are programmed to deal with so many situations in life; all but the big one. Hence, the need for hospice; our travel agents for the once in a lifetime mystery trip. Leroy, you???ve shared so much of your experience with us that I think I can safely say, we???re all scared, for both you and ourselves. And I guess, this is where faith comes into play, faith and the travel agents. You???re in my prayers daily.

Sent by Sharon | 10:19 AM ET | 01-23-2008

Dear Leroy,
My heart took a little leap when I read that you are contacting hospice. It was not the news I was expecting. However, I think you are courageous to do it.
I took care of my ex-husband when he died in 2000. I was in chemo treatment at the time so was not a ball of energy myself. I had never experienced anyone dying at home and was terrified. I could not have managed without the wonderful hospice nurses and social workers. They were so helpful and very caring.
George talked with them and signed all the papers when he came home from the hospital. They delivered durable equipment and medication. They made the experience better for all of us and I truly could not have managed without them.
Wishing you a good experience. Knowledge is power!
You are in my prayers.
Charlotte

Sent by Charlotte Kewish | 10:19 AM ET | 01-23-2008

Hi Leroy, Yes, it is a bit scary but...you are being "proactive" and checking out a service that you may need. My husband made the choice to do that ahead of time at the advice of a hospice director who he met at a Christmas gathering. She was the relative of a friend...she said, go ahead and contact the hospice organizations and find out what they do. Their main goal is to help the family members be a family and go about their daily routines. Also we learned that there is more than one hospice group in our town. I've also talked to others who've used various hospice organizations and found that these groups do not all operate exactly the same. Some people have even been dissatisfied with their hospice services and told us what they did or didn't like and what to be sure and ask about. So, you are on a fact finding mission! Another thing my hub and I talked to with our counselor is the outside perception of the big drama, that people "call in" hospice. But she said really, think of the hospice as providing a service, and you are going to interview them to find out what they do, so you can think realistically. You can help us all who read here with your reports back about what you find out. So even though it's a visit you'd rather not make, it will be a practical one that can put you back in charge. Keep us posted; I read your blog every morning. Your friends in Spokane WA Sally and Tom. PS If you feel up to it, after you do your investigation, go to the coolest coffee shop and/or bookstore and buy something enriching for your tummy, taste, and mind. Works for me. Either that or rent/watch a wacky movie and laugh it up. Reward yourself for having done a difficult task. Ya hear me now! Sal

Sent by Sally & Tom | 10:20 AM ET | 01-23-2008

Hospice is comfort care. We all are looking for comfort. It does not mean they are taking anything away from you it only means they will make an addition to meet your current needs. They are a wonderful organization that can anticipate our needs along with our families. I wish you comfort and peace.

Sent by Debbie | 10:23 AM ET | 01-23-2008

Leroy, I would be a little nervous also. Tap into their expertise of pain management, they are the best. You are right, it does not mean the end is near, they can make you comfortable while enjoying life.

Sent by Lisa | 10:25 AM ET | 01-23-2008

I believe in Hospice and plan to get their services when I'm ready - I just don't think I'm ready ready yet. Have a chemo schduled for Fri. then will see how I'm doing. Havn't been doing well at all latetly - fainted 3 times but recovering from other little problems. My family doesn't want to leave me alone, my father is in hospital and may me dying 85 yo. Can't drive and am on bedrest at least today and tomorrow.So take advantage of hospice to make your life easier - it doesn't mean you are going to die any sooner.

Sent by Vicki (FL) | 10:26 AM ET | 01-23-2008

Leroy,
You are such a wonderful role model. Your words today and the comments of others are so helpful and full of courage.

I learned this week that after further testing they did find new cancer cells in my chest fluid. Today I took my first Tarceva pill.

Although it pops in and out of my head occasionally, Hospice is something I haven't let myself think about. Checking it out is a good thing. I respect you so much.

Thank you.

Sent by Laurel M. Jones | 10:27 AM ET | 01-23-2008

I think it's great that you're having this meeting because I think it will actually make you feel more comfortable with the idea of hospice instead of less. I am a social worker at DFCI, I've written once before and all too often we see hospice get involved too late in the game when it's hard for them to help. I'm no doc, but you seem to have a lot of living left in you!

Sent by Kim | 10:28 AM ET | 01-23-2008

Everyone I have ever spoken with regarding hospice has hated the idea of talking to them before and been very pleased and relieved afteward.

Sent by Steve | 10:33 AM ET | 01-23-2008

The hospice idea is a great one, Larry, go for it!--because they deal with symptom management, not just end-of-life issues. So, hopefully, they can help you be more comfortable at home--small adjustments to your meds might have a huge impact on your comfort. In addition, they are GREAT at assisting with some tough conversations with your family and friends, and they help you articulate what it is that YOU WANT from WHATEVER time you have remaining. Their assistance can be very helpful to Laurie as well. I have always sought the help of hospice for my patients, and I think the docs, nurses, social workers and volunteers who work in hospice are wonderful caregivers to us all....

Sent by Nancy Glass, MD | 10:35 AM ET | 01-23-2008

Leroy - hospice has come to mean so much more than it used to - it is a way of managing your life, however long it may be. People are arranging hospice earlier so they can be in control, and sometimes find out they don't need it for a long time. I have planned to look into it, and your posting pushed me a little closer to actually doing it. My main concern is the impact on my family - it will make my eventual death so much more real - but that will also prepare them better, whether I live 6 months or 5 years. But think of the peace of mind we'll have by settling things in advance, knowing we can retain control even when we physically aren't in control of our bodies.

Sent by Marcia Greer | 10:39 AM ET | 01-23-2008

Leroy:
My wife spent the last days of her life in a Hospice Hospital. They do have many other things to offer than helping one at the end. I knew nothing about them until my wife placed herself in their care. I believe that they are the greatest health organization in the world. Every employee from the top doctors to the people that keep the place spotless are the kindess, caring people we found in the medical world. They are the experts on controling pain no doubt about it. They know more about pain than all the doctors in the best hospitals in the country. I think you will be amazed at the help they can give you in many areas.

Sent by Stacey in Florida | 10:49 AM ET | 01-23-2008

None of us know what is round the next bend Leroy. We are all together on this journey. We all love you.

Sent by Linda Bongardino | 11:03 AM ET | 01-23-2008

Hospice is not about death.
It's about life - yours and theirs who love you.
OK, OK - it's the part of life that butts right up against death, true, but it is still vivid life. Leroy, you have been brave about your life and it's challenges so far. That bravery has brought you surprises, connections, sustenance. What makes you think this time will be so very different? You've got what it takes, no doubt about it.

Sent by Ceese Stickles | 11:13 AM ET | 01-23-2008

Dear Leroy,
My mom decided on Suday to use hospice. She doesn't want to suffer from the side effects of chemo anymore. She is very comfortable with her home care agency that also offers hospice. They are setting up the admit meeting on Friday to officially get that in place. Medicare may help with more expenses after that. The family is trying to accept her decision. The treatment was working, but too physically hard for her. I find comfort by the comments today on Hospice care. It helps when we share. Thanks ya'll.

Sent by Marge from Texas | 11:17 AM ET | 01-23-2008

Hi Leroy-- you are in my thoughts and prayers. Where there is caring, good things happen. This blog is proof of the deep caring folks have for you.
I hope that you get the support of good caring folks at hospice.

Sent by Jean | 11:34 AM ET | 01-23-2008

Leroy,
A new twist in the road but a sound decision. Use whatever resources are available to you and hospice offers some great supports and services. Still, the thought of going this route must feel a little scary or something. Leroy and Laurie, we are besides you every step here.

Deep peace,

Sent by betsey kuzia in albany ny | 11:44 AM ET | 01-23-2008

Leroy, I respect you so much. My heart and prayers are with you as you take this brave step.
much love.

Sent by liz | 11:58 AM ET | 01-23-2008

Hey Vicki (FL) - sounds like you're going through a tough time - but hang in there! Your comments have always been so insightful and helpful. Just wanted you to know that a fellow Leroy's blog devotee was thinking about and praying for you.

And for you too, Leroy, of course. And everyone else.

Sent by Gretchen Hoag | 12:02 PM ET | 01-23-2008

Leroy, you are spot on!! Hospice can come in and out of your life as needed. They are not the angel of death. They are there to make life more comfortable.

As difficult as it is to talk seriously about our own death, I think it is very good to get "your wishes known" and for you to develop a relationship with Hospice.

Find out if they will serve you Mai Tais with a little umbrella ;-)

I plan to have as much fun as possible. When I'm so sick, I can't get out of bed, I want to demand they bring my horse into the bedroom so I can cuddle ;-)

Sent by Karen D. | 12:03 PM ET | 01-23-2008

Leroy, They are wonderful people, you just don't want to meet them. They help many through the final stages, but you are not there yet. Hope and Faith are strong weapons against what we have, keep fighting. No hospice, it's way too soon. Stan

Sent by Stan Wozniak | 12:07 PM ET | 01-23-2008

Dear Leroy,
You've shown great courage to go through the treatment you've shared.When the time comes and the medicine cabinet is emptied of all possible courses, know that hospice will be the most peaceful experience for you and for those who have walked with you through this tenacious disease. Hospice gave me peace of mind that my Jim was not in pain those last days. This peace sustained me. Your family will know what I speak of.

Sent by Helen S Drab | 12:08 PM ET | 01-23-2008

Leroy,
Calling in hospice does not mean doomsday. Some patients can be "on hospice" a long time, believe it or not. (Maybe even someone like Art Buchwald?) But I've known of others. My family has had good experiences with hospice, in that, they have more available than the doctors. They can give you more intense attention for your pain, and all the other problems that accompany chronic illnesses. They can also help Laurie if she needs it. It's amazing how the "little things," i.e., phone calls to docs., hospitals, insurance co.'s, etc., take so much effort and energy and we don't even know how depleting that is. Hospice will help with that. Of course you're nervous, but a person with illness such as yours is always nervous. Try not to look at it as a bad thing if you can. Carpe Diem.

Sent by Donna Rubinetti | 12:13 PM ET | 01-23-2008

Leroy,

I am so VERY happy that you are taking this step. I've been with hospice since the early eighties. Hospice is not about dying as much as it is about living well when you die.

It is so sad that people perceive that you call hospice when you are days from death. Most of the people I visit are already comatose - way past being able to utilize the many services hospice offers.

By and large, these are wonderful people with wonderful hearts. My best guess is that you will feel better after making a connection with them.

Blessings.

Sent by Diana Kitch | 12:19 PM ET | 01-23-2008

Dear Leroy ~

Reading your essays has been a part of my early morning ritual since the day your February 16, 2006 ???Commentary: Funny the Things You Think About??? was posted on my NPR Home Page. The excellence of your writing kept me looking forward to your next ???Blog??? and only later did I realize what I was missing by not clicking on ???Comments??? to read the responses of a host of others who share their thoughts with eloquence, grace, compassion and an amazing amount of humor.

Yesterday I came across the book ???Morrie??? In His Own Words??? and learned that he had been interviewed by Ted Koppel on Nightline in 1995. Morrie Schwartz was dying of ALS (Lou Gehrig???s disease) and the wisdom he shared about life and death created a positive response among the viewers. As Executive Producer on Nightline during those years, I wondered if you had the opportunity to meet and talk with Morrie yourself, Leroy.

The first chapter of this little book is titled ???Living with Physical Limitations.??? I was reminded of your essay on January 18th regarding not being able to shovel snow. Morrie says that ??????as long as you have other faculties ??? the emotional, psychological, intuitive faculties ??? you haven???t lost yourself or even diminished yourself.??? His observations on living life fully are guidelines any of us can follow.

As friends have been diagnosed with cancer I am quick to refer them to your ???My Cancer??? Blog. I would hope that some day your essays could be compiled into a book that would allow others to read your thoughts as they travel along their own path.

My own cancer experiences date back seventeen and twenty-one years to bouts with breast cancer including a six-month session with hair-loss chemotherapy. I have tremendous admiration for those who continue the fight year after year. The comments shared by the community of people who have gathered around you, Leroy, give hope and encouragement to all of us ??? no matter what we may be facing in our lives.

What enlightening messages there are today on the topic of Hospice Care. I hope your meeting is positive and reassuring. My thoughts will be with you and Laurie.

Sent by Gail | 12:21 PM ET | 01-23-2008

Leroy, Hopice nurses are so knowledgeable. They see so many people in same situation. I think of them as a protector. They can furnish you with information they have gained from hands-on experiences. They will provide advise for all sorts of questions including pain management. They will give you a gift of truly caring. Be open and freely enjoy the gift they give. I know you will give a gift right back to them as you have done for all of us.

Sent by Carolyn | 12:23 PM ET | 01-23-2008

Leroy..bless you for taking the time to just "listen" with an open mind. Please remember, we are all just a couple breaths away from being "here to there". We want to control things, but it actually makes it easier when we surrender to the one who is really in control of our life. May God hold you in the palm of His hand.

Sent by Jo Ann Baswell | 12:28 PM ET | 01-23-2008

Having the hard discussions about death and dying, as you know, Leroy, does not mean death is imminent just that you're willing to deal with the practical now. Due to health issues, mama and daddy planned their funerals with our local funeral home about 20 years ago and, to our amazement, we did not deal with daddy's dealth until a few years ago and, for us, the stress of "what to do" was already taken care of. Daddy continued to work until he was 73 and, once retired, had a good quality of life until shortly before he died. At 83, mama continues to drive almost anywhere she wants to go, swim daily at 5:30 in the morning, and the list goes on. We go to the cemetary regularly to "chat" with daddy, clean his grave and look at our "real estate." I get to spend eternity with my plot neighbor "Boozer" so mama and I get a laugh or two from that. My hope for you, Leroy, is that the conversation with hospice goes well but that you have no need of their assistance for many years to come and that soon, very soon, you will be able to get outside and take a walk by the river.

Sent by Molly | 12:42 PM ET | 01-23-2008

hospice is a wonderful thing, and my experience has been that they try to find ways to eliminate problems, so you can more fully enjoy living. it's not all about dying. go for it!

Sent by jini | 12:43 PM ET | 01-23-2008

Leroy,
I am so grateful to Hospice not only for the support they provided my father in his last weeks, but also how they cared for my Mother, his children, his siblings, his closest friends, his grandchildren...even his DOG. I want to encourage you in this meeting to see what kind of support they can offer you and the people who love you now and into the future. The services and the people associated with Hospice are a blessing. They helped me to learn about LIFE even as I learned about the process of death (by the time my family had contact with them my Dad was VERY ill). Plus, you will have a relationship established already for the times ahead when you "may" need them more. That trust is important. There were certain nurses that my Mom really attached to, and we were so glad she knew and trusted them at some times she really needed answers and comfort.

And because we are so afraid of death that we are even afraid of talking or thinking about it, I think you will find that the can help take that fear away.

Sent by Kelley E | 12:43 PM ET | 01-23-2008

Dear Leroy
You continue to lead the way brother.
As an ovarian cancer survivor and ICU RN, I can tell you people usually wait far too long to involve hospice.
They are about living fully and comfortably while being supportive of family at the same time.
If you sign with them, remember, this contract can be broken.
Wishing the best with your visit.
oxox karen mason

Sent by karen mason | 12:57 PM ET | 01-23-2008

Leroy:

One of the greatest lessons you have given to people through your blog is how to live with cancer. Perhaps you will have the ultimate opportunity, should you choose to take on the challenge, to give us lessons on how to die. No one is exempt from dying. A very few of us,however, may be able to show us all how to do what is inevitable and to take us on that part of our journey with you with a sense of purpose and dignity. It is hard to put in words and I hope you understand.

Susan

Sent by Susan P | 1:11 PM ET | 01-23-2008

Good idea to talk to hospice, Leroy. And, it means nothing more than that; just gathering information - which makes you stronger. I remember when my husband was dying 15 years ago... We had, at times, felt like if we talked about death, if we made a will (we were young), if we took care of living wills, we were just testing fate, maybe hastening death. We were wrong - and we felt much better after doing those things. Really, I think it made living easier.

Sent by Jan Richardson in Olympia, WA | 1:13 PM ET | 01-23-2008

Thank you for sharing yourself in this way, I can't tell you how much I have learned from you and everyone else here. In many ways, I feel like some of the most important things I have learned have come from this blog, and I really mean that.
In my family, Hospice came in after the fact. My sister died at 34 from Diabetes. Hospice helped in so many ways. She had a nine year old son at the time, he is now 18. Hospice helped my family help him while dealing with our own grief. I never knew how many resources and supports were available not only to the patient, but to the family and friends as well.
Thanks again, so much, for opening your heart to all of us, I can't even begin to explain how much this blog has changed how I live my life and interact with those around me.

Sent by Christa | 1:18 PM ET | 01-23-2008

I remember reading about a hospice-like program that didn't preclude treating with a curative intent. That sounded like a good option for me.

As we age with our cancer, medical research matures as well. There are sometimes new discoveries and new drugs that come along as you fight your cancer.

I've always said, though, that the researcher's timeline is not my timeline. It's unfortunately longer and slower paced. My cancer is going along at a faster clip.

I'm glad that medicine has helped you and allowed you to live longer. I wouldn't be here without drugs that were approved in 1997, a year before I was diagnosed.

Sent by Scott S. | 1:28 PM ET | 01-23-2008

Dear Leroy,

May the love of this blog community and those close to you bring healing and strengh. We are all following the same path. I especially pray for courage. May God bless us all.

Sent by Sasha | 1:54 PM ET | 01-23-2008

Leroy, of all the brave things we've "watched" you do, this is one of the top 2! Facing the "C" and now accepting that you need different caring professionals to stand very close as you finish the walk...and who really knows when it will finish? Laurie will get so much from this too; they work wonders for the caregivers, they will give her permission to allow herself to run the gambit of all her emotions. And hey, remember the "2nd opinion" option applies to Hospice providers too! Shop around and see which absolutely fits the specific needs you and Laurie bring them. As always, you are not walking this alone; you have Laurie, your families, wonderful friends and all of us out here loving and supporting 2 people we've never even met! Godspeed.
Karen

Sent by Karen | 2:00 PM ET | 01-23-2008

Dear Leroy,
We got hospice for my grandmother and they were wonderful. She was in her 90's and they helped her have a great quality of life for over a year. They finally told her they would have to leave and she lived about 3 years longer and died at the ripe old age of 102. Hospice is only there when you need them and will leave when they are no longer needed. They were wonderful and I think you will be glad you talked to them. Also, know that all of us is with you and Laurie no matter what you do. Love and Hugs

Sent by Teresa in WV | 2:05 PM ET | 01-23-2008

Mr. Sievers, I've read that courage is being afraid of something and doing it anyway. Your blog today strikes me as very courageous (actually most of them do). You are clearly not near leaving this place but some day we all will leave. How we live our lives each day and our state of mind when we leave this place is another battle ground in this war (beyond the purely physical battle). We do get to choose who we are in relation to our circumstances and cancer can't take that away. Thinking about death and yes, even accepting it is not surrender. Death is one of the scariest things we face and therefore it is exceptionally brave to see it coming and own it instead of letting the cancer or the fear work out how it's going to play out.

I also had a really good experience with Hospice. I know they can ease your burdens and your mind.

Quick note to Dona and Marsha, as one who lost someone to cancer, the people you love may want to talk about such things (to understand how you feel and possibly help you through it) but may be afraid that you don't want to and don't want to risk upsetting you or causing you to give up.

Sent by Nichole | 2:12 PM ET | 01-23-2008

Today all of the messages are so positive and full of hope.
Nards to that... it sucks that you have to go through this, that any of us have to go through this. (I guess I am the angry post today)
That's all. It just plain sucks.
Good luck Leroy.

Sent by Brit | 2:20 PM ET | 01-23-2008

Leroy,
Hospice is expert in pain control. Maybe they can give you sound advice in controlling of your pain. Hospice doesn't mean death soon. My prayer is with you everyday.

Sent by helen | 2:26 PM ET | 01-23-2008

Leroy,
What a huge step but taken with your usual honesty and dignity. You're leading the way for many of us and we're following in your footsteps. God Bless.

Sent by Miriam | 2:47 PM ET | 01-23-2008

The real issue, Leroy, is that hospice will provide both you and Laurie with so much care, compassion, and comfort you will wonder how you have managed to continue along without them. Practical advice and consoling words are just a piece of their work. Hospice is the last source any of us want to know about, but I hope that you will find even a brief moment of relief in their presence.
Take care.

Sent by Kay from PA | 2:49 PM ET | 01-23-2008

Leroy, my husbands Dr, for the last year has suggested Hospice. He has allways said no, I am not ready for that yet. I allways feel sad that he takes that position. We are doing palative care only. He has closed his mind to Hospice as he looks at it as the end. I am so glad that you are having a meeting with them as I know they do have so much to offer. I too realize that it is natural to associate this with the ending of life but I also know that they can help so much with the living now. I am interested in your thoughts after you have met with them. Also would love to know what Lauries thoughts are. This doesn't mean anyone is giving up. It just means there might be things that we ourselves have not thought of that will help us all to have many better days ahead. My thoughts will be with you and Laurie today.

Sent by dorothy in oregon | 3:11 PM ET | 01-23-2008

Dona: Hang in there - it may not be what you think.

LeRoy: The more you have planned for yourself, the less decision making with which you burden your family. The more control you take of your own "plan of attack" (you like those fighting references), the stronger your defenses.

Will everyone keep my dear cousin Linda in their thoughts? She is having a 2nd lumpectomy after the first one didn't "get the right cells".

Sent by Liz L. | 3:19 PM ET | 01-23-2008

I believe you can get better if you want to.

Sent by Kevin | 3:20 PM ET | 01-23-2008

Leroy:

Hospice is not only for the patient. I've felt like hospice also provided me as a care giver with palliative care. I was so relieved to have a nurse to call 24/7 when anything didn't seem right. I was relieved to have trained aides assist with bathing so I didn't have to worry about one of us falling. The chaplain didn't mind that I was not a believer or that the patient hadn't ever been a church-goer. We all had spiritual needs.

So if an when the choice is made, it will be for you and the whole care giving team.

Ruth

Sent by Ruth Ratzlaff | 4:08 PM ET | 01-23-2008

Almost thirty years ago my husband was dying from melanoma and the two of us were alone most of the time trying to make sense of a real nightmare. I was up all night giving pain meds and spent my days taking care of him and the dogs and trying to remember to feed myself. It was so exhausting and sad and full of adrenaline that i was probably nuts. When the sun would go down was the worst of times. Oh how i wish hospice had been around then. It would have been so nice to have someone professional come in and tell me i was ok, bring me the pain meds so i wouldn't have to run to the pharmacy and even just talk to me. Years later I became a hospice nurse. It makes me want to cry now just thinking about how lonely I was through those months before his death. Several times a doctor who knew of him but was not involved in his care, would stop by at night to see how we were doing. What a kind person, he didn't have to do that, wasn't going to get paid but i will never forget him. Hospice is not only for the dying. There is also alot of pain in those watching and caring for someone they love and seeing things slip away and no matter how hard they try to change it nothing is working. I think you'll find hospice takes a load off and certainly any lighter the load the better.

Sent by Susan | 4:14 PM ET | 01-23-2008

Hey Leroy, Last week I finally had the nerve to ask my oncolgy nurse about how things will be at end-stage. I'm currently in the midst of my third reoccurance of ovarian cancer. She looked at me deep in the eyes and said that it wasn't time to have that conversation yet and that I have a long ways to go before that and that this can be treated as a chronic disease. I got the impression she was worried such a discussion would have a negative impact on me. But the idea of how it will be at the end, which WILL eventually come for me with this disease, is something that is frequently on my mind. After I left I thought about something that had happened the week before - I was driving on the freeway and there was a big hulking black SUV tailgating me. I thought to myself that it was probably some asshole being aggressive. Then this SUV moved up and next to me and stayed even with my car. Again, I'm feeling kind of intimitated by this seemingly aggressive driver next to me. But then, not really consciously, I look over and see that the driver is not some road-raged filled hulk but a little old lady who could barely look over the steering wheel who probably didn't know I was there much less was intentionally trying to force me to drive differently. And it occurred to me that I could walk around worried about what the end will be like or I could face it head on and see that, like the little lady in the SUV, it's most likely not as bad as what I think it might be. I'm going to tell this to the nurse next time I see her so I can stop wondering and worrying how my family will handle it. Good luck meeting with the hospice nurse.

Sent by Martha H | 4:46 PM ET | 01-23-2008

i'm sure its similar to making a Will out, no one wants to think about that, but it should be done. Hope it is helpful for you leroy.

Sent by Jenn | 5:03 PM ET | 01-23-2008

Leroy, As a former Hospice nurse, let me give you some news...We actually had to discharge a couple of cancer patients....BECAUSE they got better! Honest. One lady had cancer nodules spread throughout her lungs. She had exhausted her radiation treatments...no more chemo.....She wound up continuing her "herbal" treatments prescribed by an American Indian Doctor in the mountains. She took all sorts of herbal concoctions, some of which were mixed with grain alcohol (Not bad, huh?!). I remember one was called "Clean Sweep". I don't guess that one needs an explanation. The nodules began disappearing...We finally discharged her when the doctor's decided it might be years before she died. I am happy to report it WAS years....She attrituted her "healing" to prayer and the Indian Doctor in the mountains of NC. Also, remember that Hospice now offers Palliative Care, not just "dying" care. This is a wonderful thing. Quality life is the focus. Talk to them. See what they have to offer. And you are quite right, Hospice is NOT just because one is dying.....Love and Prayers to you and yours.

Sent by SBPBSN | 5:12 PM ET | 01-23-2008

Leroy, I echo the chorus of those of us who feel deeply about your struggle, and about the good that hospice care can provide. Having done hospice "unofficially" as a visiting nurse in situations when either family members, patients or both were unwilling to entertain the idea of a referral to hospice, I am glad that you and Laurie are willing to take the step and look into it. Not only is hospice care focused on the patient, and helping them to do as much as possible, comfortably, and for as long as possible, but it focuses on the family and their needs as well. I know that by writing about what you learn about hospice, and experience through it, you'll be doing a great service to uncounted people who will benefit from your sharing. Bless you both.

Sent by Nancy K. Clark | 5:25 PM ET | 01-23-2008

Why does everyone appear to be terrified of dying in these threads? Hiding books? Not discussing it with loved ones?? Hardly a noble way to pass onto our next stage or life or into heaven or whatever you believe. I have stage IV lung cancer at 38 and focus on my future travels and time with loved ones, but I do my best daily to make peace with the inevitable. Embrace it. PREPARE. Death is but the next exit. Take it on two wheels, people.

Sent by Deb | 5:26 PM ET | 01-23-2008

Leroy,

I've read eveyone's responses and I agree 100%. Getting hospice involved sooner is better. After you have your conversation with them, you will be amazed. Any fears or misgivings you may have walked into their doors with will melt away. The compassion and quality of care they give to the dying and their families is second to none.

There is so much they give to the patient in the way of pain management, spiritual counseling, and other palliative measures. And to the families, they offer a respite in the round-the-clock care. From experience, this is where the sooner plays the part. Caregivers tend to forget they need to give care to themselves. Hospice accomplishes this by stepping in and doing some of the work.

When we called in hospice for my mom's last 5 months of life, mom had decided home was where he wanted to be, not a hospital or nursing home. She wanted to be home with all of her things, in surroundings she created. Hospice came in once a week at first, more often as she began to decline. Hospice made it possible for her death to be the way she wanted it; at home.

After she died, Hospice's work didn't end there for our family. They offer grief counseling for a period of a year or longer in the form of groups or private sessions. They don't sever the ties they build with the families they serve and are always there to offer comfort.

Many people find calling hospice to an act of control. When you go to speak with the, remember, this is the ultimate gift you can give yourself and your family.

Sent by Teri Thomas | 5:29 PM ET | 01-23-2008

Leroy, our NP also urged my husband (with stage 4 pancreatic cancer) and I to meet with hospice agencies before we needed them, before we were in a crisis. We didn't want to hear this,at the time, but it was good advice.

The point the NP made which made the most sense was that the fit between the patient and the family and the hospice caregivers had to be a good one for the experience to be beneficial.

You don't want to find out too late that you don't like your hospice nurse or that your hospice agency doesn't offer the services that you want.

So, think of it as doing more research and getting prepared and then be like Art Buchwald and outlive your hospice prognosis.

Bon Courage.

Sent by Marilyn | 5:45 PM ET | 01-23-2008

I am amazed at all the comments today. So full of love for you. I haven't mentioned this, but I am on my way to being a clinical phycholgist. The hospice organizations are one's I'm considering working with.They were wonderful for Mom's recovery. And when the time came for her to close her eyes for the last, hospice was there and so was her little dog,Jetta. Jetta never left her side those last few weeks. The hospice people are very knowledgeable and have a great sense of comfort for the loveds who take care of the patient.
Have you read any books written buy Mitch Albom? "Tuesdy's with Morry" is one you might like. Also the authur has another book called "The five people You meet in Heaven"

Sent by Leah | 5:57 PM ET | 01-23-2008

To Dona:
Hi, I have a friend who has 8 liver mets,some of them quite large. She has lived with these mets for 3 1/2 years and is still going strong. Yes, she's in constant treatment, but she still has a good quality of life. Hang in there. If your doc says there's options, go with that. This is not the end.

Kate

Sent by Kate Fuehrer | 6:07 PM ET | 01-23-2008

It'll be a whole lot like meeting the doctors and therapists: once you know what you're talking about, much of the fear and dread will be relieved. I have never regretted meeting any of my caregivers, but I dreaded meeting all of them! It's the doing that's the hard part...the having-done-it is much, much better.

Bring questions and take notes!

Peace
jj

Sent by Joan Jones | 6:20 PM ET | 01-23-2008

I hope by this time you have had our meeting and it has brought you (and your wife) some psychological relief. Death is scary - at least to me - but hopefully hospice can help reassure you about some of the fears that go along with thinking about dying from cancer(such as controlling pain) and help you enjoy your life more.

I hope I managed to overcome my cancer and I die of old age decades from now but if I haven't, and I am given the grace of seeing my end coming from somehting like cancer, I am very reassured by the hospice that is on our city. I know people that work for them, people that volunteer for them, and people who have used their services and they are wonderful.

Sent by N.R. | 6:21 PM ET | 01-23-2008

Leroy;
You are such an inspiration. Hospice seems like such a big word but it really means "pallative care"... comfort. We all want that for you. Been reading your blog daily. Thanking God for you and praying for peace in your heart and mind; that is what we all really want out of life isn't it? You are doing great! Have a piece of apple pie for me! Sending lots of hugs and prayers your way...

Sent by Denise from Ohio | 6:45 PM ET | 01-23-2008

Leroy- My best advise is to absolutely talk to and interview several hospice services. Having used two different hospice services twice in one year, I can tell you that the services and care provided differ dramatically. Case #1 my mother-in-law. She was in the final stages of ovarian cancer and opted not to seek further treatment. She chose to spend her remaining days in her home and did remarkably well until her final week. We were referred to a hospice organization which was wonderful! They got her pain meds immediately, saw to her comfort completely, gave guidance and support to us family members and were on-site within minutes of her passing to help us make arrangements. She left this world in peace and pain free. Hospice was truly a godsend.
Case #2 my father-in-law. He was diagnosed shortly thereafter with lung cancer but refused all treatment altogether. Even getting him to a doctor was a battle and he refused to discuss hospice. Once he lapsed into unconciousness, we called a different hospice service (recommended by the assisted living facility) and had a horrible experience. The nurse arrived, intoduced herself, took the necessary information, and upon seeing how agitated we were becoming over my father-in-laws pain, left to get him pain medication. She left and was gone for over 3 hours while my father in law suffered terribly. (Apparently she got lost, then ran out of gas, etc.) When my father in law passed the next day, July 4th, the assisted living center called and paged our hospice nurse for over 6 hours before she finally responded!! The assisted living facility then contacted us to let us know that hospice was unavailable. This hospice provider's service was horrible, her attitude was not compassionate, and my father-in- law should not have suffered this way and we, the family, should not have been ignored. Two totally different scenarios..........but when I have to go this route again, believe me I'll do a lot more interviewing and reference checking. As others have said, look at this process as an information gathering event. Make decisions now, well in advance. God Bless you, Leroy.

Sent by Karen T | 6:54 PM ET | 01-23-2008

leroy, have you read "Tuesday's with Maurie", or "The 5 people you meet in heaven?" by Mitch Albom. Wonderful reading.

Sent by Leah | 7:10 PM ET | 01-23-2008

Hi Leroy,
I have been trying very hard not to read anything into the lastest news you have been sharing with us. I especially don't want to compare you with others that I have known that have had cancer, as we all know that each individual and their experience(s)are unique.
That being said, I do want to share with you my own experience with hospice. God Bless those people Leroy, truly. They have a unique perspective and outlook towards illness and life and death that is unlike what probably most of us encounter in our day to day lives. They definitely challenged my long held beliefs and (maybe) misconceptions in regards to life and death and helped my family to hang on to some measure of control when everything around us seemed just about completely out of control. The hospice professionals were kind, understanding, gentle, caring, respectful and most importantly, non-judgmental. They were invaluable in many ways and I am grateful and thankful that hospice care is widely available now. I, too, was hesitant to meet with hospice, as it felt like that signified "giving up." Only you will know when(or if) you will want or need to be involved with hospice Leroy. But I hope you will have a good meeting with them that will at least provide you with information that you don't have at the moment. They can be a big help if or when you might want to take advantage of their services.
As always, my thoughts and prayers are with you and Laurie.

Sent by Cindy C. | 7:52 PM ET | 01-23-2008

Hi Leroy,
I'm late checking in today. Just want to say that it would be scary to me, too, to talk with someone from Hospice.I think I will get there in the next few years, though, so your post today gives me courage. Thanks.

But at the same time -- a few years ago, my mom signed on with hospice, and all us kids had to accept that that meant she would die soon. But guess what? She got better, so Hospice kicked her out! She lived several more years after that.

Ya never know... but while she had Hospice, it was wonderful.

I love you, Leroy.

Sent by Doris | 8:11 PM ET | 01-23-2008

Dear Leroy,
The thought would make me nervous too. I never want to think about my death. But one thing is for sure, I would want hospice so that my family can see me in comfort, and so that we can focus on each other and not pain meds, feeding, etc. I think it's a good idea to check it out now so that later you don't have to use up time and energy putting it into motion or feeling intimidated over how it works. Please know that so many of us are with you in thought and prayer as you keep moving through your journey. By the way, did you ever get around to having some pie the other day? I sure hope so.

Sent by Beth S. | 8:26 PM ET | 01-23-2008

Dear Leroy,
I so admire your putting words with your feelings, and sharing your words with us. I hope that you will be able to continue to do this for a long time.
As you learn, we all learn.
As you meet your "never the same"
experiences, we meet our "never the same" experiences. Thank you for providing a lantern for so many journeys besides your own.

Sincerely, Kathy

Sent by Kathy | 8:26 PM ET | 01-23-2008

Another note of praise for Hospice and the services they provide to all of us involved from the patient to the caregiver. As a former caregiver who used their services and a later employee of a local Hospice I can only encourage you in what you are doing now. The very best to you and Laurie.
Kathy from San Diego

Sent by Kathy Peacock | 8:27 PM ET | 01-23-2008

Dear Leroy,

I have written before. I lost my husband last July to cancer. Since then I have been reading every one of your blogs. I am sure that some people will think that I am crazy to want to partake in your journey after the events of 2007, but stangely I feel that you have given me a peace and that is your gift to us all. We have never been alone because of you and your largess, and plase know that you are not alone now.

There are no finer people on the earth than the hospice nurses. They absolutely will make you smile with their love and humor. When the doctors run out of options, the hospice nurses give you the options with dignity.

You and Laurie are in my thoughts and prayers.

Sent by Trish McGowan | 8:32 PM ET | 01-23-2008

LeRoy, At each stage of my cancer I have had in place a living will, a durable power of attorney for health care, and a will. these include instructions to cremate me, not have a religious service and to allow an autopsy if one is desirable. By contrast, my parents and my sister vehemently refuse to have anything but wills. My father is far along with Alzheimer's and is 85 and blind. with nothing but a will in place, he could be kept going for years yet in absolutely terrible condition since he was unwilling to face the fact that one day he would die. my mother, also 85 and with a heart condition, talks in terms of "if" she dies not "when". They watched the whole of the Terry Schiavo ordeal on tv, were totally opposed to unplugging her and incredibly believed her husband was the villain of the piece! my grandfather, shortly before he died at age 95, said to me, "what would happen if we didn't die, if we just kept on?" i watched my grandmother linger for a whole year in her 96th year in a nursing home with a totally incapacitating stroke. it was a nightmare and my mother insisted on having her force fed. (my grandmother had nothing but a will either) i cannot even begin to tell you how agonizing it was to watch her. anyway, i would not be happy about checking out hospices but, boy, i sure do not want to be a barely living guinea pig in today's brave new medical world either as method upon method is forced upon me to eke out a little more time. so go out and do it quickly. the hospice people do a good job and it can even be set up as home hospice. it did give me peace of mind going into the cancer surgery knowing that my husband would pull the plug. carol

Sent by carol irvin | 9:04 PM ET | 01-23-2008

Hello Leroy it???s me again you can always discontinue hospice any time the good thing about hospice they will come at any hour I called the hospice nurse at 2am he came right over all I asked was a question also they can give you the good stuff (morphine drip) threw iv you won???t have to go to the hospital for it they are always one phone call away from the Doc. Your pain will be managed a lot better with them on board they also pay for all the medication and supplies you might need bring them to you Carolyn

Sent by Carolyn | 9:18 PM ET | 01-23-2008

Hospice rocks!!! The experience and care we received from Hospice was incredible. It has forever changed how I look at life. Hospice is all about living! Our entire family benefited from it and continues to this day.

Sent by Penny Coeur d'Alene, Idaho | 10:07 PM ET | 01-23-2008

Leroy- I was stunned when I read that you were going to see the great people at hospice. Then I thought about it and just know it will be the right thing for you to do. They will help you plan the future so that as events arise you're mentally prepared and already have a plan. This will free you to have more time to do what you want to do.

Hospice was incredible when my 16 yr old nephew committed suicide several years ago. They came to the home, took calls, held hands, and talked to everyone. You will be surprised at what they do. And, here is yet another opportunity for you to teach us all something new.
Leroy- you are wonderful!

Sent by linda | 10:19 PM ET | 01-23-2008

Dear Leroy, I'm sure the idea of hospice is distressing but I want you to know that some people actually graduate from hospice ALIVE. After my cancer diagnosis I volunteered for hospice in my local community. It is a godsend for both the patient and the family/loved ones. Having seen hospice in action I am comforted to know that they are there for me someday.

Sent by Jane | 10:27 PM ET | 01-23-2008

Mr. Sievers,

I think it's a good thing that you've decided to meet with hospice. Not that the end is near, or anything like that! Hospice care can benefit not only you, but your loved ones.

I saw first hand how the hospice program was able to help my mother, my sisters and myself during what were to be my mom's last two weeks of life. Her journey and ours would have been much more difficult without the help of the hospice staff.

My mother died three months after the death of my husband, Shawn. Shawn was dx'd with Stage IV colon cancer in Feb '05 and died in May '05, six weeks after his 34th birthday.

He spent 9 of his last 14 days here on earth at home. I knew he was sick and I knew he was dying. I think if someone had used the words "actively dying" with me I would have encouraged Shawn to consider hospice. The nurse with our insurance company said he was "a pretty sick man." Well heck, I knew that but I guess I'm just one of those people you have to spell it out for! He felt that hospice meant he had given up and he didn't plan on doing that.

But looking back now - and I'm writing this because you never know, it might help someone else - I wish I had had the help of hospice. There was only one night that I didn't spend with Shawn in the hospital. That was the night he spent in recovery following surgery to repair his colon perforation. There were even two or three nights spent sleeping on the ER floor (I know it sounds gross, but I wasn't leaving his side) and one night sleeping in a regular chair in ICU. I'm not sure how I managed to function once we got home because he was on 24 hr abx and TPN. There were bags to spike and lines to flush every 4-6 hours. If I had known that he was "actively dying" I would have preferred to focus that time on being with him and having hospice there to provide the nursing care they could offer to Shawn and the emotional support for he and I both.

It could have been better...Shawn deserved better. I was physically and emotionally drained - to the point that I even yelled at him one day (sorry about that, Shawn). Shawn was sick and dying, my life and the lives of our two boys were going to be changed forever and I was basically freaking scared out of my mind!

Anyway, that's my story. Thanks for allowing me this opportunity to share. Thank you for your blog. Even though I still mostly cry when I read your posts, there have been times when you've made me laugh out loud! I'll remember your name and your words for the rest of my life! My prayer for you and your loved ones is peace and comfort. Thank you, again Mr. Sievers.

~Dorothy~

Sent by DLN | 11:08 PM ET | 01-23-2008

Dear Leroy, My husband & I watched the program with Ted Koppel. I immediately came in and found your blog and keep up with all you and your family has been through. Who doesn't say, I'm proud to know Leroy, he's a dear friend...that's how it feels to read your blog, you're become a dear friend.
You've been an inspiration to thousands of people - I read some of the notes written to you. Because you chose to be so open about your life and your dealings with cancer and your treatments; because of your great courage in being so open - people have been able to share in an equally open manner. What a gift you've given this world. I've walked the road beside two people who had cancer, my dearest friend, Renee and my husband, Jim. Renee would have loved your blog; and would have written you often - cheering you on and sharing in her own way all the battles she fought...few people knew how hard that battle actually was. I was blessed because she let me into her inner world; and her intense battle with breast cancer. How courageous she was! You remind me of her. My husband is doing well - we are both blessed and remember how fragile and brief our lives actually are.
I salute you as you walk into the next chapter of your life. We all needed to be reminded that we need to make plans...some people do that by talking to hospice; others by contacting attorneys and drawing up necessary paperwork. You are still in charge and that is positive thing. Thank you for being such a caring, honest man. You've touched my life. I thank you.

Sent by Kathryn | 11:21 PM ET | 01-23-2008

Wonderful comments by many people. I truly believe hospice means living angels. They really are!I know of nothing else so noble as to care and comfort the living and the dying with dignity. To those that work at hospice I salute you. To those visiting be reassured there. To those choosing it may you be comforted there and blessed by those angels. Leroy thanks for sharing each step you take in your journey and may it be a long long long journey!

Sent by Rich | 11:23 PM ET | 01-23-2008

Hospice is wonderful. You have given to so many. Now is the time to give to yourself. No one lives alone or dies alone.

Sent by Lailani Dana | 11:39 PM ET | 01-23-2008

LEROY, I AM A HOSPICE VOLUNTEER - THINK THAT IT IS JUST CARING AND HELPING AND HELPING YOU TO NOT BE IN PAIN!!! I HOPE THAT YOU OUTLIVE EVERYONE AND SUFFER LESS - AND "GET FIRED FROM HOSPICE". ENJOY READING YOUR BLOG - TAKE CARE AND PRAYERS AND LOVE ARE GOING YOUR WAY

JANICE GOLDBERG WHITE

Sent by JANICE GOLDBERG WHITE | 12:04 AM ET | 01-24-2008

I write this with the outmost respect for everyone who is facing the ultimate journey. I find that for me, talking about my death with my family and friends, although difficult at first, has brought me a sort of peace. It is no longer the 800lb gorilla in the room. It has allowed me to make plans for when I'm not around anymore as well as for the time I have left. I realize that this is not for everyone, but for me and those around me, it has made it easier to deal with my cancer because we're not focusing on the end but on the time I'm still going to be here. Denial?... perhaps. Scared?....you bet, but I get a bit comfort knowing that I have some control of my last journey and I won't be alone.

Sent by Jose R. Gomez | 8:54 AM ET | 01-24-2008

Meeting with Hospice isn't a defeat, as my experience with them is that they are some of the most life affirming folks you will ever encounter. We had Hospice for my father. At first, he was resistent to the idea, but after talking to them, he decided that while they might not be able to do a whole lot for him, they could do everything for his family.

And they did. The Hospice approach and philosophy allowed us to experience my father's death with beauty, dignity and grace. Allowing Hospice to come in and guide him and us through his last journey was the last gift he gave to us.

So, Leroy, I would encourage you to talk to the Hospice folks and consider their services - if not for you, for those you love.

I wish you peace.

Sent by Joyce in FL | 11:17 AM ET | 01-24-2008

Thank you very much Leroy for opening this door. I have friends who have used Hospice and have only heard wonderful things about the experience I have a couple friends over the last few years who , having Stage 4 cancer and feeling the end of their lives here might be over soon, called on Hospice... and then after a few months, needed to tell Hospice to leave because it was clear they were not anywhere near the end !

Thank you .

Sent by Nancy O | 3:05 PM ET | 01-24-2008

Love and Light to you Leroy. Thank you for sharing this with us.

I was glad to see you back online, Tom. I did not think I had seen a post since October when you asked some hard questions. I hope I have someone like you around to ask those kinds of questions.

Sent by Vi | 6:54 PM ET | 01-24-2008

Dear Leroy,
As an oncology nurse it is more than relief from pain that I would want for you; it is peace with your emotional/mental/physical suffering. Moving towards the end of life is sort of like being born backwards; we didn't know what we were getting into as babies and we sure don't know what we are getting into when we draw that last breath. All we know is that we won't be here any more. Hospice? These folks have walked that path with many others and are the experts in the delivery of a peaceful/loving death experience for the "patient" and for the family. Often fear keeps patients battling away at the cancer when the pain of battle is far worse than letting go.So hospice, acupuncture,meditation/ prayer, good meds, thoughtful/artful medicine, good nursing care, the love of family and friends, and insight will make each of our days (no matter how many we have) fully complete.

Sent by Suzanne | 6:52 PM ET | 01-27-2008