Speaking in Code

She was very nice, as you'd expect. After all, she's a hospice nurse. Her job is to get people through one of the most difficult experiences there is.

This was really sort of a get-acquainted session. For everyone to meet and at least start that conversation. But then she said something that I don't think I'll ever forget.

"Hospice is code for six months."

We had been talking about time and expectations. Actually, we had been saying that we thought it was pretty early to be having this meeting, because we weren't giving up yet.

I don't really remember the context for what she said. When someone says something like that, the other words usually get drowned out.

She did say, of course, that everyone hoped that we would meet, and then never meet again. Again, something I would expect her to say, and mean.

I don't think she was being dishonest in any way. She was being realistic. In her own way, encouraging us to be realistic too.

She may be right. I may have only six months left.

On the other hand, hospice may be code for: "Who the hell knows how much time I have left?"

But it's good to start the conversation. We're going to have to have it at some point, I guess.

I just like my version of what "hospice" is code for better than hers.

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Well, I see the meet and greet is over, and now reflection of what exactly the whole thing meant. 6 hours, days, weeks, months, years who knows. Her comment was that is typically how long hospice care is in place or meant to be in place. I have read entries on the blog that said a year of hospice care. Go figure.

So, you have information, and are now a better informed consumer. Keep pressing on Leroy. Please!

Sent by Sue Chap | 8:02 AM | 1-28-2008

Leroy, Hospice is a hard conversation to have. It is hard to hear that others believe it is necessary when you do not believe it or want to hear it.

I hope they're all wrong. But, I'm also glad you had the conversation. Doesn't sound like you're ready for hospice yet but you're prepared for it, if and when you are.

Bon Courage.

Sent by Marilyn | 8:07 AM | 1-28-2008

There is plenty of time left to believe in a miracle. You have nothing to lose in BELIEVING you can be one of them.

Sent by Sarah | 8:14 AM | 1-28-2008

Hospice did a phenomenal job assisting with my grandfather and best friend. Just think it stinks that young people have to think about this-I am sorry about that. I hope that you will find another treatment. What ever you decide, you will be in my prayers.

Sent by Jen | 8:18 AM | 1-28-2008

Hearing the word "hospice" sounds much like hearing the word "cancer." All the words after that are like a jumble in your brain. But then you begin to sort it out. Because that is all you can do. Once again day by day. I look forward to tomorrow's blog as I do each day.

Sent by Helene Weingarten | 8:19 AM | 1-28-2008

Hi Leroy,

Thinking of you here in Australia, keep fighting.

Sent by Craig | 8:21 AM | 1-28-2008

I concur with your view of hospice = "Who the hell knows how much time I have left?" While her honestly is well appreciated, dont let it drown you.

Sent by sarah | 8:23 AM | 1-28-2008

Leroy, I'm an anthropologist, not a medical worker, but I have to say I'm hugely surprised and not at all happy at what the hospice nurse said. It seems down to my very bones ALL WRONG to make such a prediction! First of all, people vary so very much. This isn't denial: from this blog and responses I've learned that the course of serious illness is very, very hard (impossible?) to predict (at least up to a certain point and I have no idea if you are at that point). I understand she wasn't saying YOU have 6 months, but I still don't like it. Second, it seems to me the perfect guarantee that the person sitting in front of you, nervous and wanting some straight information, will NOT HEAR anything further.... How can that be a helpful beginning?

Sent by Barbara K. | 8:30 AM | 1-28-2008

Well, what do you say after that? I don't know if I could put a sentence together after that bombshell. However, I guess when you look at it you know things are looking rough. You have support. You have great doctors. You have your tough spirit. Most of all you have the knowledge that they were wrong before on "time" and can absolutely be wrong again. I doubt you will make it to 95 years old but I don't think they can tell you what will happen. I think your code is more accurate. You've never followed the rules before so why start now?

Sent by Lori | 8:33 AM | 1-28-2008

You have heard the six months prognosis before. It does hit in the pit of your stomach but no one really knew two years ago and no one knows now. However, it is always best to be ready and to have things planned the way you want them and to be free to make sure you do the things you want now.

How was the physical therapist? Could you digest that after the hospice?

Sent by Dona | 8:36 AM | 1-28-2008

Dearest Leroy,
Just remember that hospice with all of their wisdom, does not know when anyones time is up. My grandmother kept them a year and a half and she lived about 3 years after that. Please don't let what they said discourage you. Use them for your pain management and in 6 months tell them it was nice meeting them and send them back to the office. 6 months of good pain management should help you feel a lot better. You and Laurie have a good day.

Sent by Teresa in WV | 8:40 AM | 1-28-2008

Leroy,
The first thing I do every morning is look for you online. So many of us are living with your cancer. We send out our prayers and thanks for having you in our lives.
Linda Bongardino

Sent by linda bongardino | 8:41 AM | 1-28-2008

Your comments caused me to remember the story of Art Buchwald, who entered hospice in February with "weeks to live", decided to later leave hospice and enjoyed the following summer at Martha's Vineyard. He eventually passed the following January, according to his daughter-in-law, knowing it was his time. May you choose your time as well! With much thought and care...

Sent by Gail Walker | 8:43 AM | 1-28-2008

That is a hell of a punch delivered in just six words.

Keeping you and all those who also battle in my thoughts and prayers...

Sent by Tim Broussard | 8:43 AM | 1-28-2008

As much as I like and respect the work of Hospice, they have no way and no science to back it up to be able to predict how quickly one is expected to die. Maybe in this particular person's experience, those coming to hospice have passed sometime within the 6 months as she stated. While the words are blunt and sucked all of the air out of the room, please don't allow yourself to become a self-fulfilling prophesy just because she said so!! God will determine for each of us when it is our time.

Needless to say, I'm somewhat disappointed in this person and hospice to be so callous at a first meeting. "Glad to meet you Leroy. Yep, you'll be dead within 6 months. Any other questions. Don't make long range plans - sarcasm off". Good grief!!!

While death is the end for us all, I'm not sure I'd want her around me since she may have already placed some bets!

If this experience has made you uncomfortable at this particular hospice, go elsewhere. The end may be the same but the journey will be a more pleasant and caring one.

Blessings and prayers.

Sent by Al Cato | 8:44 AM | 1-28-2008

Leroy,

Whatever the "code", I want you to know that - like so many others out there who have followed this blog - I will be here with you - reaching across cyberspace to take your hand and give it a gentle squeeze, to let you know I much I care. You are so right - no one knows how much time any of us have left. However long, I will continue to be here with you each and every day.

Sent by Susan | 8:52 AM | 1-28-2008

Leroy,

Hospice is really code for "you have a diagnosis that may or MAY NOT end your life in six months". They are not stamping you with an expiration date. You have a crappy, awful diagnosis, that is it. Regardless, having your lifespan defined that way is a kick in the gut. With a ton of bricks landing on top.

When my 38 year old, totally functional sister found out her brain tumor was growing like a beast, just 4 months after her third craniotomy(in 12 years), chemo and 6 weeks of radiation, her oncologist said,"you can do comfort care." He just threw it out as if he was taking our order at Denny's, as if he had a list of things to check off. "Fried or scrambled, sausage or bacon, comfort care?, strawberry or blueberry?" That was a ton of bricks in the gut. I told my sister that I want to sign up, too, because 'comfort care' sounds like it includes a day at the spa!!

I'm so sorry if all you heard was the timeline. Remember the 'MAY NOT', and if you do accept Hospice services, let them give you a good back rub or 2.

Sent by Heather in AZ | 9:05 AM | 1-28-2008

Dear Leroy, I love your attitude. Who the hell knows indeed. My brother's father-in-law lived with hospice care for over a year. My father had hospice for only last days of his life. The hospice people were wonderful... and honest, realistic, supportive. I kept thinking how can they do this job? I volunteer at a hospital holding sick babies, my sister says she could never do that. But she volunteers at hospice and I say I could never do that! There is a place in the world for all of us. Peace and wellness to you.

Sent by Susan | 9:12 AM | 1-28-2008

Leroy, don't give up! You're bravely facing reality, but as you say, who really knows how much time is left? I, and all of us, will keep hoping and praying for you to have more and better times. We love you.

Sent by Mary Beth Monterosso | 9:12 AM | 1-28-2008

Leroy:

Don't let the "code" spook you. Burge and I talked to Hospice on our doctor's advice, without enrolling, choosing home health care instead, also on our doctor's advice.

By starting early the paperwork was ready when we did decide to go and that made it simplier to make the chance when needed. When you go into Hospice, you give up certain treatments such as IV fluids, something Burge wanted to keep...something you are not yet doing and may not have too do.

Some of the choices you make to join Hospice we all should have made when we wrote our estate plans, including living wills, medical power of attorney, etc. Those too are all amendable, and should be discussed with your doctor, not just your lawyer or neighbor, as things such as withholding fluids when we can't drink for ourselves can be important on levels that the non-medical educated might not know about. I had always heard not to withhold fluids, but in the end, that wasn't the choice Burge made and it worked better his way.

Guess I'm trying to say that scarey as it is, in reality Hospice asks questions we all need to ask ourselves early on, with or without Cancer. You, just have reason to follow through now, something most of us wait until the last minute to do. At least you have time to think about them and not sign something while on the table rolling into emergency surgery.

My heart is with you and all those at the blog today. It was a tough weekend at this house..."six-month anniversary of his leaving"...but, I also felt Burge's love was with us and encouraging us every step of the way.

love
Nikki in Kansas

Sent by Nikki | 9:14 AM | 1-28-2008

Dear Leroy,

I like your version better too. Many prayers and much love flowing your way.

Sent by Connie | 9:15 AM | 1-28-2008

Leroy,
This is all so very scary. Everyone tip toes around the reality of how very frightening all of this Hopspice stuff is. At least it is to my husband who is a Lung cancer patient and me. We are dedicated readers of "My Cancer". I know so many others have gone ahead of you into hospice care... but I don't know them. You're talking about it out loud, to us, in your blog. We're out here, newly arrived, barely oriented to the cancer world. My family is going through the same doors that you have, just at different times. We've listen to you as you have lead the way. Hopsice... It's such a touchy area. Some people can't even mention the possibility of death approaching- it's very frightening. It is almost taboo.
I know that we want to bolster each other, keep up the fort walls, but... This is scary! Maybe Hospice can help us with these parts?
I'm just saying that we're proud of you for making the journey public. Just as you did for us through the many frightening stories that you have covered all over the world. We are listening now too. Thank you for being honest.

Sent by Deb | 9:18 AM | 1-28-2008

Yes, hospice is there to help you be more realistic, but you have depended on you for all this time and you have gotten yourself through so much. Keep listening to Leroy as it is your life.

Also, try not to think too far ahead. It just makes it more difficult.

God Bless you Leroy.

Judy

Sent by Judy Voller | 9:19 AM | 1-28-2008

If these medical people have all of the answers, then why are there so many of us HERE with so many questions? carol

Sent by carol irvin | 9:20 AM | 1-28-2008

Good Morning Leroy. Thank you for sharing your experience with us, it has got to be hard for you, yet on the other hand, I tend to think that you may get much more comfort and understanding from sharing and talking to us here than you will get from that "factory for the dying". Are any of us given six month?
I can't help but be angered by her statements. You don't need to be abruptly brought into reality--you are living with and facing it or you would not have been there.
Leroy, I may be jumping to conclusions but it sounds more like "tough love" than what I have always heard about Hospice.
How often and when is your next "visatation" with this expert? You do not need candy-coated pills but on the other hand, you do not need to be hit over the head! Can their theory be to shock you out of any pain? Maybe that will clear your mind. Love you Leroy!

Sent by J C R | 9:20 AM | 1-28-2008

Remember Art Buchwald's hospice stay-- the longest in history.

Sent by carol | 9:21 AM | 1-28-2008

Here's to a new day, Leroy!
I'm currently reading "Kitchen Table Wisdom." It's really a fun book to read with lots of stories. You might really enjoy it and find a source of strength in it. I know I am.

Stay strong and stay focused!!
Kathy Bero

Sent by Kathy Bero | 9:22 AM | 1-28-2008

Dear Leroy,
As a physician-survivor, I see Hospice as code for HOPE. While riding the ups and down of my survivorship, I???ve been comforted and liberated by the realization that acceptance and hope can happen together. And quality and quantity can happen together, too. They don???t necessarily have to be either/or. When things aren???t going well for me, I can accept the likely outcome and, at the same time, hope for the best outcome, no matter how unlikely. Hospice and hope are not mutually
exclusive. Recovery is possible. Some
patients do unexpectedly well when the
toxicity of chemotherapy or radiation is
removed. Not uncommonly, patients
live longer than predicted. Hospice also helps patients nurture other important hopes.
Although I???ve only posted to your blog a few times since you started it, I???ve been following along. The
Thanks for helping people talk and learn about survivorship. With hope, Wendy S. Harpham, MD
(This is a column in which I explain more fully how hospice can nurture hope:
http://www.oncology-times.com/pt/pt-core/template-journal/oncotimes/media/WendyHarpham-H%20Word-OT-Dec252006.pdf

Sent by Wendy S. Harpham | 9:23 AM | 1-28-2008

Your code for hospice is so much better ... and much more accurate, too, Leroy. No one here on earth knows how much time any of us has left - whether we're fighting cancer or not. Don't dwell on time ... let's think quality.

Hospice can provide wonderful pain relief for you, and the important thing to remember is you CAN leave hospice still alive and kicking. It does happen. And I'm praying that happens for you.

Sent by Dianne in Nevada | 9:24 AM | 1-28-2008

Using hospice does not mean you are giving up. Hospice does as much for the family as it does for the patient at this time. What could be kinder, easier than a person who is familiar with such things to assist in easing a person and their loved ones through this transition? I only wish I had hospice for my loved one. I feel like questions and unknowns could have been answered, at least by experience. I think the 'code' for hospice is that the doctor has to deem someone to have 6 months to live in order for the insurance to pay for it. It's a red tape thing. And you are right, people do stay on hospice for much longer than that quite often. I wish you ease.

Sent by Lily | 9:28 AM | 1-28-2008

Wow, I think that would stop my thinking right there too. You should tell the hospice nurse that she should put *that sentence* (about it being 6 months) toward the *end* of the meeting so people can hear what she is saying. Hospice doesn't sounds like Leroy, not until you've given in. I don't say given up because you will never do that. But you might give in. I don't know what being Leroy is like, so I won't make any suggestions here. I don't know your pain level, your tiredness level, your stress level. I can only imagine it. So for now I'll just virtually sit with you and watch what you do next.

Sent by Alycia Keating | 9:30 AM | 1-28-2008

Leroy,
Please stay mindful of the fact that when she speaks of a "code," she's referring to the roundabout, non-commital, dispassionate way that our doctors often view our diagnoses and prognoses--if only for the sake of self-preservation. She was speaking bluntly, and out of turn, on behalf of the medical profession (the same folks who gave you six months two years ago). I wish I could give you a hug. I wish you could give me one back.

Sent by Ellen | 9:30 AM | 1-28-2008

Hi Leroy,
I follow your column and feel like I know you. I think that was very inappropriate for the nurse-or anyone- to say.Nor does her saying it, make it true in any way. When I read your column I wonder if you are thinking about all the other things to which you contribute, besides this experience of cancer- like voting in next week's primary or working on a presidential campaign? I see your future when I read this, not your cancer. I am sending all my good thoughts and wishes.

Sent by DSRoberts | 9:34 AM | 1-28-2008

NO, NO, NO....perhaps in the past, this was the definition of hospice. But I can tell you, from our current experience with hospice, that this is no longer the case.
My father-in-law has been with hospice since last June, and he's doing better now than before. Instead of going to the hospital or dr's office, they do everything from home - his lab work, checkups, changing meds. Its been a wonderful support to my mother-in-law too - she has a dedicated resource that she can lean on.
I am disappointed that the individual that you met with would say something so insensitive. Don't get me wrong, I'm all for being honest and up front with people, but this was just inappropriate.
You've proved them wrong before Leroy, and I'm confident that in this case you'll do it again!

Sent by Lesa in Kansas | 9:40 AM | 1-28-2008

L,

What she probably means is that the stats say that people stay in hospice for 6 months. Of course, stats don't really apply to individuals, let alone exceptional individuals.

Take it as a call to clean up your act. But you knew that.

Courage.

Tom

Sent by Marshall Spriggs | 9:40 AM | 1-28-2008

Hospice might have told you that - but it does NOT mean YOU have six months left. They came to our house and talked with us way, way before Tom passed. They came one day - and then did not come back for months afterward. We just got the initial talk over with - and then they came back at a much later date when the doctor told them that we needed them to start coming in. Our first visit was the worst - but it is NOT a death sentence. Hang in there, Leroy - prayers for you as always.

Sent by Deb from Michigan | 9:41 AM | 1-28-2008

Hi Leroy - that Hospice is Code for 6 months REALLY means this: Your Hospice benefits are first parceled out for 6 months, then you re-certify for 3 months multiple times, then 1 month multiple times (I can't remember the multiples.) As the lady above noted if you want some forms of care they don't do those - they are intended to be the palliative guys. My Mom signed up for Hospice 17 months ago for her Breast Cancer care. At the time we thought 3-6 months sounded right, but she "Buchwald'd" us and thrived under their care. She continues to enjoy the attention.
I pray for you daily,

Sent by Kelly D | 9:47 AM | 1-28-2008

I'm glad somebody mentioned Art Buchwald. Very few people check out of hospice care as he did, and it just goes to show that we don't really know.

My cancer will be with me for the rest of my life, however long that is. I hope it is long enough to see my grandchildren, but whenever the time comes, I hope that we have hospice to help ease the transition.

http://ruthsmusings.blogspot.com

Sent by Ruth from Northern Virginia | 9:49 AM | 1-28-2008

Your version of the code is accurate.
Her's she needs because she has not fought your fight. I can still hear Joe saying -What choice do I have. Nothing is ever the same again.

Plan for the worst - hope for the best.

Sent by Irene | 9:57 AM | 1-28-2008

How horribly insensitive of this person! Only the Lord knows how much time you have left. Like others who have posted, I've known people who have passed on in the estimated amount of time and others who have not.

I've been following your blog because I feel that I've been surrounded by cancer most of my life - from my birth mother dying of leukemia the month before I graduated from high school in 1975 to my adopted mother's breast cancer in 1995 to my husband who is living with Hairy cell leukemia now. You and Laurie are in my prayers.

Sent by Rhea | 9:58 AM | 1-28-2008

I have a nasty, ugly sarcoma cancer and the prognosis is not rosey. I refuse to give up. No one has said the word "Hospice" to me yet, but I look at it as another option that one can consider. That six month figure for Hospice is a lot like the way the medical profession uses statistics. It's anyone's guess. Keep asking questions. My motto is to take every day as it comes and to enjoy life to its fullest. Hang in there, Leroy!

Sent by Jayne in Minnesota | 9:59 AM | 1-28-2008

Like Gail, I immediately thought of Art Buchwald. No one knows how long any of us have. Just keep on keeping on, Leroy. As always, you are in my thoughts and prayers.

Sent by S. | 10:03 AM | 1-28-2008

Hi Leroy,

No one, and I mean no one, knows how much time anyone has left. It's good you got the info you needed. However, I would trust your own gut and your doctors for what is to come and even the doctors are wrong plenty of times. I would have tuned her out immediately after she said that - OMG - how else could you have reacted? Hang in there and know that miracles exist and we all love and support you and Laurie.
My prayers and thoughts are with you everyday,

Lianne

Sent by Lianne Friedman | 10:05 AM | 1-28-2008

Just want to agree with others, above. It's not a Hospice dx. afterall, that gets you to them. The 6mth dx. is from your MD. And he, as you have said, may or may not think you have 6 mths. It's just a guess.

As all these things are.

Sent by Jan | 10:06 AM | 1-28-2008

"My doctor has been urging me to do this for more than a year."
If you had met with Hospice right away when your doctor mentioned it, they would have made the six-month comment then too. And, obviously that would have been incorrect. Logically, it shows that her statement is meaningless. However, hearing someone say that would stun anyone. It seems like an odd comment to make, I just don't see how that is useful or helpful in any way. Easier said than done, but I hope that comment doesn't alter your approach. Sending wishes for peace and wellness!

Sent by Christa | 10:08 AM | 1-28-2008

Tell Hospice they can have a "use by" date, too. I would ask for a different hospice person. To me, hospice means you need some help coping with things, and they are here to help. It does not come with an expiration date. Pain management, counseling and consoling are the roles of hospice.

Sent by Dianne (DC) | 10:10 AM | 1-28-2008

Hi Leroy:
The Caribbean is windy today,and the cruise ships are rolling in. My understanding is that you have access to hospice when a doctor says you have 6 mos or less. They have no idea, and it sure wakes you up when you hear that.
Bottom line: Hospice nurses are the gentlest nurses out there. There job is to take care of your pain, so you can manage your life. Acceptance of their help is all you need. You can still fight and look for treatments. You can still do most things right now, so do whatever you want, while you have the ability.
Prayers and love going to you from St. Thomas. Best wishes from the tropics,
Julie

Sent by Julie | 10:11 AM | 1-28-2008

I told you that Hospice needs to talk to you more than you need to talk to them! Their program, while great for most of it, needs MUCH more work in their Delivery methods and you are the most articulate person to train and assist in writing and improving their manual instructions that I have ever met! Words mean such a lot, and they NEED to learn better words! That said, we can all appreciate their good heart and intent. Hospice workers are a breed apart!

Sent by Lucy Groh | 10:13 AM | 1-28-2008

Dear Leroy,
I was surprised when I first learned what hospice meant. It means comfort care and only comfort care. No antibiotics, no TPN, no surgeries, no dialysis, in short, no more tries. So probably the "6 months" isn't too far off. Where would you be now if this time last year you had stopped all forms of therapy except for pain meds?
Hospice means you are done with the fight and you know it. From everything I read about you, you are not there yet. Love, Cathy

Sent by Cathy Sewell | 10:16 AM | 1-28-2008

Hey Leroy- heres another code that us cancer patients use, never give up or quit, I had a doctor sixteen months ago tell me I would be toast in a short amt of time, he did not use code talk, fortunately his prediction is now toast. Sixteen months later I am alive, healthy and thriving in my business.That Dr left me on the canvas for 3 months after his prediction,it stays in the back of your head and it really stalls your progress, because they are basically telling you to give up. Fortunately I found a team that kept plugging away. My mother found out she had stage 1111 cancer two yrs.She's 88 yrs old, several well-wishers told her to check into hospice immediately she declined, she also is alive and doing well. All I'm saying Leroy is NEVER let anyone throw a time frame on your life. Keep plugging away, theres new therapies,cancer clinics doctors popping up every day. I'm sure any one of them would be proud and happy to try to help you, After all you have a captive audience of cancer patients that read you every day,and it wouldn't hurt any of there practices if they've got some magic bullet. Livestrong Leroy, you spoke with the hospice people now it's time to get better. Best of Luck.

Sent by Tom Mulrow | 10:21 AM | 1-28-2008

Remember the proverbial bus! No one knows when or how. All we can do is live a good life, treat each day like the gift it is and ease our way along. Just keep on plugging along and know we are with you whatever happens. My best to you.

Sent by Jenene K, AZ | 10:25 AM | 1-28-2008

Dear Leroy,
As a long time oncology nurse, I think a better way to describe the hospice time criteria is this.........because of insurance issues, no matter what your insurance type is, hospice has to use time paramenters, because your insurance will pay them so much per day for your care. That's the business end of it. BUT the fact is that(I like this description better), to that end, your doctor has to be willing to document that if you died within 6 months, he/she wouldn't be surprised. I'm surprised that your physician didn't explain that to you! People can and have been on hospice for much more than 6 months. They also can get fired by hospice for not dying soon enough. I believe hospice facilites an individual to be able to live as long as they can and as well as they can. In general, a "patient" cannot take chemo or other "active" treatments while on hospice. Hospice teams are masters at providing excellent pain and symptom management and emotional support to "Patients" and their families. They are incredible. Unfortunately, they also have to deal with the business end.
I agree.......it's good to meet them and know what they provide and what services are available to you. They are loving and compassionate people who are passionate about what they do.

And, you know what you need........you ask the right questions. I read your writings each day, and you always touch my heart. Thank you for sharing so honestly and eloquently.

Terry
(Oncology nurse)

Sent by Terry Gremel | 10:28 AM | 1-28-2008

Dear Leroy,
My understanding is that insurance companies don't want to pay for hospice unless the M.D. estimates the patient has 6 or fewer months left. So everyone has to say that; the "code" is for the system, not for individual people. The lady did not need to say that however.

Sent by Alison | 10:36 AM | 1-28-2008

Dear Leroy,

What can WE do for you?

In "six days or six months" the frightening part is the knowledge of the time frame, as if the entire future was suddenly very close, almost touchable.

Cancer is a big pile of dang for sure, and it took away many of our loved ones. We can be mad about it, we can scream and kick, we still need to be at peace with the fact that some of us will die young.

It is not a question of fairness; who would say that some of us deserve a better, healthier life?
It is evolution in motion. Without evolution and adaptation there would not be any life at all.

That is a scary thing but it brought me peace when I lost my spouse.

Dear leroy, I hope that you will be at peace with whatever decision you make. I am grateful that you spend so much energy writing this blog. You are a generous man. Please let us know how we can help you.

Sent by Fran | 10:41 AM | 1-28-2008

Maybe "hospice is code for six months" was a realistic statement within that nurse's experience. Regardless, the statement remains a generalization and it should not challenge your survivor spirit. There is no harm in believing you might be an exception to the nurse's "code".

With an enormous amount of respect, I wish you a comfortable, pleasant and strength-filled day.

Sent by liz h | 10:43 AM | 1-28-2008

Hi LeRoy -

No one knows! Not a single soul knows how long we have on this earth. We have had multiple episodes of cancer in our family and no one has ever nailed the time of death or been even in the ballpark.

A conversation with hospice is code for taking control and advance planning.

Just like no one so many other parts of their fate.

It is what we do with our time that counts.

Best wishes for a better, stronger week!

Liz

Sent by Liz L. | 10:45 AM | 1-28-2008

Dear Leroy,

O.k., them's fighting words! I know you are much more diplomatic than I can ever hope to be but I think I would have said, "Thank you very much, now don't let the door hit you in the back."

Lianne is right. None of us know how much time we have. That's part of the whole mystery of life.

You keep that chin up and pay no never mind to what she said. And I would ask for a different hospice person, too. Maybe someone a little smarter?

A la vida!
Mo

Sent by Mo Spikes | 10:52 AM | 1-28-2008

Hello Leroy,

I've been lurking for the past few weeks, as I've felt that anything I could offer was not coming from a place of true understanding and sharing. Everyone's comments have spoken for me, better than I could have myself. I must thank you again for your poignant writings.

But, I do understand the statements that suck the air out of the room...stage IV on initial diagnoses...the initial social security disability form that characterizes conditions "expected to result in death" in order to expedite the approval process. These things sent me into a funk for quite some time...back in 2006; and here I still am.

I'm so glad that the six month code has been explained by readers. I like your explanation for all of us much better, than that of your introductory hospice nurse. She is probably reading this blog and feeling pretty badly by now.

Sheara

Sent by Sheara | 10:59 AM | 1-28-2008

but you said they've been recommending hospice for a YEAR!!!!!!!!

Sent by ann wright | 11:00 AM | 1-28-2008

Dear Leroy,
Please let the other words get drowned out for a day or three, then realize that your version is the one which really counts...It's your life even though each of us lives it right along with you. Having had cancer too, not all of the words we hear are comforting, just realistic. Then come the war words. You have picked up the Fight for us all I am thankful for this and for all of your encouragement.Keep on winning the war-our war. Prayers and Blessings to you,
Jo-Ellen

Sent by Jo-Ellen | 11:15 AM | 1-28-2008

I'm really stunned that a Hospice nurse would make a comment like that. Realistic? Unfortunately, probably yes. Comforting? No! Anyone that goes on that first visit to a Hospice is well aware of what they're up against and have no doubt spent endless hours going over "time" in their own minds. To me, being greeted with a "code" like that shows it was just another day at the office for that nurse. How very sad to have heard those words. My heart goes out to you Leroy.

Sent by Sue | 11:18 AM | 1-28-2008

File that nurse's comment in the "thoughtless and just plain wrong things medical people sometimes say" file and try to forget those words. Although I know how powerful words are and, once said, are hard to forget. I recently signed on with hospice and at my first meeting the hospice nurse told me that I could exit the hospice program at any time, if my condition should improve or if I decided to go back into treatment. The whole conversation held hope, even knowing that my reality is not particularly hopeful. Six months may be a hospice guideline, but we all know well how no one knows how much time we have. Like you, I've outlived several prognoses, including the first which gave me 18 months. I'm a 9 1/2 year survivor. I guess I'm mostly writing to try to reverse any negative impression you may have been left with regarding hospice. I've found them to be a tremendous resource and source of encouragement and comfort, not only for myself but for my family.

Thank you again for your blog, Leroy. I am thinking of you.

Sent by Shonda Cortez | 11:29 AM | 1-28-2008

Dear Leroy,
I hope that hospice worker reads your blog and removes that statement from future patient meetings. It added nothing positive to the conversation.
No one knows how much time you or any other patient has left.
When my former husband entered hospice the doctor told me he could live six months. He lived only twelve days. No one knows!
I am grateful for the help the hospice nurses and staff gave us during that time.
You obviously are not ready to throw in the towel. I pray that new treatments will be found to help you. I pray that you continue to heal from the many procedures you have had.
Charlotte

Sent by Charlotte Kewish | 11:30 AM | 1-28-2008

If only medical folks could be taught to understand the import of their every word when heard by the client/patient or the family. I knew I was in for it when the technician who did my first PET scan ended the session by saying "God bless you" without any eye contact.

Define hospice as you choose and live every damn day as fully as you can.

Peggy

Sent by Peggy | 11:34 AM | 1-28-2008

I like your hospice code, too! You still have your great sense of humor!

Sent by Barbara Langan | 11:41 AM | 1-28-2008

Leroy- I got that feeling of pressure behind my eyes when I read your blog today. You know what I mean. Remember, live EVERY day.

Sent by Marcia | 11:51 AM | 1-28-2008

Leroy: A quick second post that will not apply to you but might to others.

Hospice did "check in with my boys" something that we had kind of forgotten. They gave my youngest, then 14, a chance to talk to someone besides family. It was very low key and he chose not to talk much, but it was a chance for him to tell someone what was bothering him while in the "safety" of the home setting not a doctor's office.

Of course, I made it very plain to the Hospice representative what our family belief system was and how we preceived death, God, etc. so that there wasn't a clash of ideas to confuse things, but I did appreciate the opportunity they offered my son to talk and ask questions . Others with younger children may find the same opportunities for their kids.

Nikki

Sent by Nikki | 11:54 AM | 1-28-2008

Sometimes, very good people who deeply care and are sincerely trying to help, will say the wrong thing (or maybe the right thing at the wrong time, or the right thing that's hard to hear?)I know I stuck my foot in my mouth several times when my Brother in Law was ill. It sounds like she was trying to answer specific questions about whether it was too soon with direct honesty. Understandably, it shocked and upset you.

I don't take it as being insensitive as many other posters have. I think it means that she can be completely trusted to be real with you when it counts. Being real doesn't necessarily mean that she knows anything more than you do and Leroy - I'd bet on you every time.

As amazing as the hospice folks are, no one is perfect all the time. It certainly won't take a psychic or a private investigator for her to get this piece of feedback about how the weight of those words affected her famous patient and others here. Hopefully, this information will help her and her patients through similar discussions in the future.

Peace and health.

Sent by Nichole | 11:54 AM | 1-28-2008

Leroy, It's a conversation, containing an opinion, nothing more. There is no way, with any certainty, anyone can make that statement. All I have to say is the direction it went was wrong on so many levels. I know we all want the truth, but what exactly is the truth? Only the " Old Man" upstairs knows the answer to that one. The rest of us no matter how educated, or experienced, can only guess. Code my a--, unkind words in an initial meeting. Many Prayers coming. Stan

Sent by Stan Wozniak | 11:56 AM | 1-28-2008

Although it might be hard to hear, there needs to be some type of definition about Hospice, if for nothing else, the insurance companies. However, just because they have to have a definition, doesn't mean you have to buy into it.

The Hospice folks are some of the nicest, most caring people you'll ever meet. So, please cut the nurse some slack - she's not going to lie to you, and she is going to be there when you and your family need her. Also, she isn't going to take your hope away. If anything, Hospice gives all its participants hope, but in a different way than hoping for a cure or remission.

So, please don't let your fear and anger about her comment determine your course with Hospice. And you know, Mr. Buchwald might be looking down from a cloud right now, smoking a stoogie and grinning, and saying "Hey, Sievers, bet you can beat my record!"

I wish you peace in your decision.

Sent by Joyce in FL | 11:58 AM | 1-28-2008

Leroy, I hear spunk in your words today. This is such a serious subject but I couldn't help feel like I wanted to chuckle at "who in the hell knows how much time I have". You just keep that spunk going. Use it to fight with. If and when you need them they will be there, in the mean time just keep moving along. We are all here with you. Try to have a very good day. We will wait to see how your other appointments work out...Keep us posted.

Sent by dorothy in oregon | 12:02 PM | 1-28-2008

Hi Leroy,

I am sorry the nurse disturbed you with her hospice definition. But more importantly, I am troubled by your statement "...because we are not giving up yet", as if calling hospice in is equated with giving up. I found the experience I've had with hospice to be far more empowering. I wonder if you were speaking of the idea that hospice is the last hold out. It shouldn't be. While they do not offer treatment for the disease, they also do not stand in your way if you feel you want to continue with a course of treatment.

Her choice of words was quite unfortunate. but there are other nurses/personnel you can talk to there, or perhaps there is another hospice in your area. We have 3 distinctly different hospice organizations in Toledo, plus a fablulous place for terminally ill cancer patients called The Victory Center. Their services are free of charge to all patients diagnosed with cancer. The services include massage by massage therapists who are specially trained in oncology massage, using relexology, reiki, and healing touch. They offer group, individual and family counselling as well as social gatherings.

There is alot out there, Leroy. If hospice isn't a fit for you, then keep searching :o)

Sent by Teri Thomas | 12:08 PM | 1-28-2008

we love you leroy. fxxx the code.

Sent by Claire | 12:23 PM | 1-28-2008

Morning Leroy,
There is nothing easy about cancer. I know people who have had hospice for 2 years, I'm sure we all have stories.

I was talking to a friend about The Bucket List and said "my friend would love to be able to do all those things." Cancer isn't like that. I meant you, I could not really explain that you were my friend online. They just would not understand what you mean to us.

As I type this, I'm listening to IL Divo sing my way, how ironic!!

Always in my thoughts and prayers.

Sent by CV | 12:29 PM | 1-28-2008

Leroy,

I agree with this comment so totally there's no need to write it again .

Dear Leroy,
As a long time oncology nurse, I think a better way to describe the hospice time criteria is this.........because of insurance issues, no matter what your insurance type is, hospice has to use time parameters, because your insurance will pay them so much per day for your care. That's the business end of it. BUT the fact is that(I like this description better), to that end, your doctor has to be willing to document that if you died within 6 months, he/she wouldn't be surprised. I'm surprised that your physician didn't explain that to you! People can and have been on hospice for much more than 6 months. They also can get fired by hospice for not dying soon enough. I believe hospice facilities an individual to be able to live as long as they can and as well as they can. In general, a "patient" cannot take chemo or other "active" treatments while on hospice. Hospice teams are masters at providing excellent pain and symptom management and emotional support to "Patients" and their families. They are incredible. Unfortunately, they also have to deal with the business end.
I agree.......it's good to meet them and know what they provide and what services are available to you. They are loving and compassionate people who are passionate about what they do.

And, you know what you need........you ask the right questions. I read your writings each day, and you always touch my heart. Thank you for sharing so honestly and eloquently.

Sent by Diana Kitch | 12:36 PM | 1-28-2008

I do know what hospice means, but.....

I ordered them, just to keep my Mother company in the nursing home (she'd been there years already w/ALZ). They were lovely, but could not really do anything like massage, etc.

Eventually they said they wouldn't be able to continue, since they couldn't really do anything for her. She was in her 90's & still held on.

So, you see, since you've outdone all the predictions thus far, you chances are mighty good you'll 'outdo' this one also.

Have you read the book 'Proust was a Neuroscientist'. Interesting, but does
require concentration. Go to the chapter of Escofier for an interesting look @ mind / body / senses.

The very best to you.

Joan P

Sent by Joan P | 12:38 PM | 1-28-2008

Leroy,

The creation of hospice care was a great leap forward in healthcare, creating a gentle, supportive environment for the patient who has decided to forgo further treatment. Many people, given the choice, would prefer that setting to the alternative: lying in an ICU attached to a lot of tubes, listening to bleeping monitors.

Though your nurse's comment was blunt, it was her way to get to the point and not tip-toe around the reason for your visit. Many patients say they want to hear the truth, not a sanitized marketing brochure. Don't be too hard on someone who has devoted her life to caring for the terminally ill. She must have a big heart in there somewhere.

Steve

Sent by Steve | 12:46 PM | 1-28-2008

Leroy--
I wish she hadn't said that, because you are right--it drowns out the rest of the conversation. I have had family members use hospice well over 6 months. And when we met with them for my mother-in-law, there was NO mention of a time frame. They just were so great with everything--so don't get discouraged.
I know its easier said then done. We are all here for you.

Sent by Kathleen Schmidt, NJ | 12:57 PM | 1-28-2008

In my experience, Hospice is code for: getting support for you and your family. The six month part is more about insurance companies and medicare. There are lots of Hospices out there, and you can shop around. Staff and survices can vary, so you don't need to be "stuck" with one that has left a bad taste in your mouth.
Having said all of that, I want to thank you for over a year's worth of posts that have touched me, encouraged me to pay attention to each day and reminded me that we are all in this life together.

Sent by Patty | 1:08 PM | 1-28-2008

Remember how long Art Buchwald lived after he started hospice? He joked about "graduating" from it in not the usual way. When my wife entered Hospice it was a relief to her. At that time most families surveyed after their loved one was lost, wished they had started earlier. The average length of survival in hospice was longer then those who chose to go it alone.

Sent by Russ | 1:09 PM | 1-28-2008

Dear Leroy,

I am always amazed at the comments well-meaning people make. I hope all the responses today have helped you make better sense of what she said. I also hope you didn't miss anything important while your head was swimming in emotional shock of "the code" comment.

The good news is that you get to keep fighting as long as you choose to. Only you will know when it is time to slow down the fight.

To Al Cato: Thank you so much for your email. It meant so much to me. I am ordering the book today, and doing much better.

Laurel

Sent by Laurel M. Jones | 1:16 PM | 1-28-2008

Leroy,

I don't buy the six months thing. If Hospice is code for 6 months, then you've had 6 months left for over a year right?

The only thing we know for sure is we have no idea how much time we have left. If I were a betting man, my money would be on you. I can see your "Hospice round two" session where down the road, you are remembering your first visit with Hospice that turned out not to be needed right away.

You've got a lot of life in you Leroy.

Sent by Karen D. | 1:19 PM | 1-28-2008

Dear Leroy,
I am sure you must have read 'Too soon to say goodbye' by Arch Buchwald. He became their (in his own word) - 'poster boy' in Hospice, and lived on to write such a funny book about his experience in hospice so don't you listen to them and keep writing those blogs to become a posterboy in your own stride.

Sent by Sushama | 1:19 PM | 1-28-2008

I think everyone knows what calling in hospice means. When your doctor suggests it, we know what he is saying.

BUT, you never know. We all have heard of patients who outlive the prognosis and hospice goes away.

My mother-in-law was given a couple of years, 10 years ago!

You are a fighter and that means a lot. I've mentioned before a clinical trial. Perhaps that is still an option?

Sent by Scott S. | 1:20 PM | 1-28-2008

Dear Leroy, I am a Hospice nurse, and agree with the many who have said that this particular nurse's comment was probably ill-advised. I have had patients on hospice, even with mean cancers, for over a year. Some with other illnesses for nearly two years. But it is our business to deal with the regulations, not to involve the patients in them.
What we do offer is excellent pain management, spiritual and emotional and practical help, the right equipment, and TIME. All of us like to spend as much time as we can just being there, getting to know you and your family, hearing your story, helping with things where we can, translating the medical world if needed. There are no real time limits, as many have said, and if you want to pursue some new treatment, we usually just say "go for it" and welcome you back when you are ready. but you get to take anything we have been able to do for pain or other symptoms with you.
My brother-in-law died 1/19 after just two days on Hospice, but there were two nice men, Home Health Aides, who came in to lift and turn him, and nurses there several times to deal with medicine and pain. Thanks to the St. Thomas Hospice.
While they were there with him, I was with another person nearing the end, in two cities hundreds of miles apart. How's that for the Zen of Hospice?
Wishing you nothing but peace, I continue to pray.
Rachel

Sent by Rachel Carnahan | 1:46 PM | 1-28-2008

I'm surprised at the rush to judgment of some of the people writing comments upstream. Leroy doesn't tell us the exact context in which the hospice nurse made the remark, so it's very hard to say whether her comment was appropriate or inappropriate. My wife is a hospice chaplain, so I know the nurse is speaking truth in a certain sense: the criterion for admission to most hospice programs is a doctor's prognosis of 6 months or fewer to live. Yet - as others have noted, above - many people live, receiving hospice care, for considerably longer than that, and some even go off the program, as they experience a turnaround in their condition.

Yes, it was one of those remarks that "sucks the air out of the room," as someone else said - particularly if the patient's doctor has neglected to share this little detail in making the referral. Yet, the nurse also has a certain responsibility to make sure that potential hospice patients know exactly what they're getting into. She's only doing her job, so I don't think we should be so hard on her. I can imagine some circumstances in which her remark could be a caring and helpful thing to say. Without the full context, we can't know.

I truly appreciate Wendy Harpham's line, above, that "hospice is HOPE." I can attest from experience, and from my wife's experience in working with hospice patients, that this is generally true.

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

Sent by Carl Wilton | 1:46 PM | 1-28-2008

God will let you know when it's time to come home. Until then, enjoy the beauty of today and meditate on all your life blessings. No one individual knows when it's time to go on to our next life. Please feel the love from all your listeners who read your daily blog. Thank you, Leroy, for all you've shared with us during your health and during your illness. You are an amazing person.

Sent by Joni in Toledo | 1:49 PM | 1-28-2008

Apologies to the hospice nurse -- but what a bone-headed comment! I mean, MAYBE if you'd piped up with something like: Hey, I hear "hospice" is code for something. Can you tell me what that is? Bone-headed and very presumptuous. There's only one God who knows all things, and it isn't this lady, no matter how well-meaning she is.

That just floored me!

Sent by Janice J, Los Angeles | 1:52 PM | 1-28-2008

I agree with the others who think this person spoke inappropriately to you. It couldn't have been any worse if she walked in and told you not to buy any green bananas!

Sometimes I think these people place more weight on their predictions than they do on our unpredictable individuality. I have seen that in so many aspects of healthcare. It's disheartening.

Remember that none of these people have a crystal ball. The book of your life has pages to turn until the point when it does not. No one in a white coat can look to the back of your book and know the number. I think there's a certain beauty and comfort in that.

Peace to you as you find your way.

Sent by Celeste | 1:56 PM | 1-28-2008

Your code for hospice is way better.
Thinking of you and sending you good thoughts.
Anne

Sent by anne lumberger | 1:59 PM | 1-28-2008

Leroy,
It seems that the hospice conversation is off to a running start.
Nikki, Kelly and Christa seem to have good approaches regarding the code comment whose context is unknown to all of us.
Mixed in with all the outrage was a good bit of information that a person unfamiliar with hospice could benefit from.
Anyway, I'm glad that you broke the ice with hospice long before you need them.

Sent by Gene Koeneman | 2:06 PM | 1-28-2008

Dates Dates Dates... who knows! You have the power to fight this and whatever else comes your way. It does not always mean we will win, but we give it our all! Remember, there is more than one hospice agency out there too! Find one that will meet YOUR needs and help to give you the strength you need in your journey.
My journey brought me here, thank you for the love, support, strength I receive daily. So many of you touch my heart and keep me going. I want to touch each of you with prayers and love. Each day, I find strength to get up and get moving with my life, because I, am not alone. I have all of you, and Leroy, you have all of us! God's peace to all of you!

Sent by Laurie Hirth | 2:07 PM | 1-28-2008

It sounds to me like maybe you are not ready to take this "path" at this time. And that's okay. I didn't find the Hospice nurse's comment as offensive as some of the other readers, but I'm also assuming that the comment was posted out of context to the conversation and possibly along the lines of what you were talking about. My experience with hospice was with my Mom, and though I was young at the time (24 and she was 55) she did seem ready to it. She was in no means "giving up" or "giving in" to the cancer, but all the chemos and the surgeries had not helped to slow her cancer and she actually said she was ready for something different. Looking back she was probably ready for 'Quality' over 'Quantity,'and for us hospice was wonderful. Though if I'm totally honest I wish my Mom had lasted 6 months in hospice for she only last 3 weeks. But it was a peaceful 3 weeks and in the end I guess that is what matters.

Sent by S A | 2:09 PM | 1-28-2008

Ann is absolutely right - if you had gone to hospice when your doctor recommended it, that would have been over a year already!!!

Sent by Bettye | 2:12 PM | 1-28-2008

Leroy,

I hope the hospice folks can make you comfortable for your fight. I continue to pray that God will work through the doctors to heal you. I've heard from people I trust that the Hospice people are wonderful.

Sent by Geoff | 2:19 PM | 1-28-2008

Measure your life in how you spend your time and not how much is left and you will live a full life no matter what the duration. You are an amazing, strong and insightful man and you have so much more to share with the world. Continue to inspire us all.

Sent by robin | 2:48 PM | 1-28-2008

Leroy, you are going down a path all of us must go down at some point, sooner or later. But who knows how many turns yours will take before the end? The nurse certainly doesn't know. Life is full of strange things including many people who outlive diagnosis. You already have a track record there. Put that experience to good use and prove them wrong, Leroy.

Sent by Marcia Greer | 3:02 PM | 1-28-2008

At first I too thought the 6 months code was not very nice. But at the National Cancer website it does mention the 6 month concept as typical so being honest is only facing it. Still as many have said it does not apply to everyone so keep on going strong Leroy! Here is the website:
http://www.cancer.gov/cancertopics/factsheet/Support/hospice

Sent by Rich | 3:03 PM | 1-28-2008

Good grief... hopefully you weren't expecting warm and fuzzies, because you sure didn't get it from her. Bless here, sorry about her bluntness, and it sure does sound the same as the first time you hear the words -- you have cancer. Geez, code or no code, that was not a thing to say on a first visit to someone you don't have a clue about as to how they would take it. A little tact goes along way especially after long battles with this disease. Hopefully she doesn't speak for all hospice workers or the program itself. Kindness, compassion and treating the person as if they were your own relative would go a long way -- hope there are some out there in the business who pass that message along and take it to heart themselves. Your perserverance, logical thinking and ability to communicate what is happening in your life to others is a source of inspiration to us all.
As I have said more than once...we are all but a couple of breaths away from the other side and God only knows when it is our time to step from "here to there". Try to tune out the timetable --- remember, any day "above ground" is a good day. xo

Sent by Jo Ann Baswell | 3:04 PM | 1-28-2008

Sorry you were told this. I can't imagine hearing those words. I do agree with everyone that says it's code. Insurance companies do have to use certain words in order to pay for specific things. That would have been a good phrase to add to her other one. Who knows why no one else has said that. Always thinking of you.

Sent by Lisa | 3:26 PM | 1-28-2008

Hi Leroy, I'm just going to be pratical and say thanks so much for this post of what the first visit was like, and because of the wealth of info and perspectives your posting has brought forth. When my husband was diagnosed, he was given some hospice pamphlets and also I looked up some info on the Net. Six months is the time frame they work with, but I remember feeling a little more hopeful when reading some follow up words "using hospice does not mean you have given up. Some people recover enough to discontinue hospice." So you never know, ultimately. As some of the other posters have said, we all can benefit from asking these questions and thinking about what choices we want. My husband was given a 6-9 month prognosis in May of 2006, but he's made it through surgery and ablation, and now that his condition is stabilized he has started following up on interviewing hospice and palliative care people to see how their services work if and when he needs them. I also agree that the person you talked to did a disservice by making that comment about the "code." IMO that is an unprofessional way of giving information and because of the emotional reaction the patient is less likely to hear what is said next. It's scary for you, I know, but you have done all of us who read here a valuable service. One of the things we can listen for is "do they present information in a professional manner?" I don't mean deny or sugar coat, but just give the policy: You can become a hospice client when your physicians determine that your illness will likely result in death in six months or less. My husband is still mobile, has a good appetite, and has way outlived the earlier predictions. You've got some tough times right now, but you have a "calling" through your blog. You help us learn and have formed an international community. How cool is that? Your friends in Spokane, Sally and Tom

Sent by Sally & Tom | 4:02 PM | 1-28-2008

Dear Leroy,

I don't think the hospice nurse meant to be offensive. However, I like your version better.

Sent by Sasha | 4:10 PM | 1-28-2008

I'm not sure I understand the point of such bluntness. And I must agree with others that it is impossible for her to predict with any great accuracy. So why make such predictions? It strikes me as heartless, though I doubt it was intended to be.
As always you are an inspiration.

Sent by Jeanmarie | 4:11 PM | 1-28-2008

If one year ago they said "who will be dead first Leroy with colon cancer, Bob my husband, with lung cancer, or those 5 young boys who died this weekend driving down the runway at John Travota's house, I bet it wouldn't be those 5 young men. Who the hell knows when your time is up. Prepare for the worst & hope for the best has always been my motto. That way you are not surprised & hopefully if the worst doesn't happen you are pleased. Hang in there Leroy, you really do not have any other choice so just keep putting one foot in front of the other. We are all with you every step of the way!!

Sent by Kathy | 4:46 PM | 1-28-2008

I don't know anything about the Baltimore/DC area, but where I live there is more than one Hospice. It sounds like this nurse is speaking in a code that is not in tune with your language. From the experience my husband had I can say that hospice can be extremely helpful, and a comfort to the family. But maybe you should look into other Hospices, ones that will work with you to provide what you need for however long you need it. I can imagine that looking up Hospices on-line is not what you'd most enjoy doing, but I would hate for you to miss out on the benefits because of your first bad impression. None of this has been easy, and I admire your tenacity. So once again, dig deep.

Sent by Denise | 5:03 PM | 1-28-2008

Man, do I agree with everyone who's ticked off by the hospice nurse's comment. But, if she meant it, I'm more ticked off by any doctor who might've sent you to hospice to learn such news -- if that was the intention. It's probably hitting me especially hard because I'm anticipating getting this "word" about my husband soon. I'm not sure there's one right way to give such news, but that sure wouldn't be it.

Sent by Teri | 5:05 PM | 1-28-2008

Leroy - I'm reminded of something I read in a book that a Dr. at M D Anderson in Houston, TX said - "I've never had a patient come in here yet, with their expiration date printed on the bottom of their foot!"
There is "no code" - no way to predict how much time the guy walking around without cancer has after today!! But, one thing I know for sure.......you have a lot of life in you, a lot to do and give and a lot of us that are praying and cheering you on..........
Remember, the Art Buchwald book I mentioned?? he had folks kidding him that he was "just faking" the hospice experience, because he continued to do so well, for so long........
Keep fighting and kicking.......

Sent by Ruth Chermok | 5:16 PM | 1-28-2008

I think it's very sad that this comment, in the context in which it was made, had made so many people angry. Leroy, you had said to her that you weren't ready to give up yet, and she commented that hospice usually indicates a six month time frame. What is wrong with that, people? It does not seem like a thoughtless thing to me at all. I know those of us with cancer are super sensitive to every word we hear, but this comment is just the facts - most hospice referrals expect six months of life, with some, of course, ending up being for much longer and some for less time. Let's give the hospice community and that nurse the benefit of the doubt, folks! They are wonderful. Not everyone is ready to deal with them, and that's ok too. Take your time, Leroy - sounds like the time is not right for you to contemplate this yet. It's your call. But let's all calm down about a sentence we were not there to hear, in a context we do not really know about.

Sent by Wendy | 5:22 PM | 1-28-2008

Dear Leroy:

While I read your most recent, I realized that you can't spell "hospice" without "hope" - or else all you'e left with is "sic," which as everyone knows is simply an anagram for that wildly popular T.V. show where they use science to figure out solutions to really, really difficult cases - "C.S.I."

But seriously, from reading all you've written, about all that you've lived, I believe you've met cancer head on, stride for stride, because you used the three things that cancer depends on for its own perpetuation: it's ongoing, always present, and never goes away.

Fortunately for us all, one may characterize hospice using those same three things.

As they say in Brooklyn, "May the folks from hospice 'moidelize' your pain."

Sent by John from Wantagh | 5:38 PM | 1-28-2008

Leroy,

I can't really say anymore that hasn't been said today except as always you continue to inspire me....

Much love to you and Laurie...

Sent by Faun | 5:44 PM | 1-28-2008

OK, I got off my butt and went and looked at some of the hospice web sites. All I can say is EW-EW-EW!! If they're not trying to convey slow
death by musak in tones of lavendar and acceptance, well, they need way better marketing. So like really dreadful "sympathy" and "you're in our thoughts..." greeting cards.

Personally, I could (and will) deal the what hospice has to offer my husband and us if the person visiting us has more the gestalt of Dennis Miller than a neutered Dr. Phil.

Sent by Teri | 5:52 PM | 1-28-2008

We have oncs and now hospice workers! Find a new hospice! I don't like this woman, and neither should you. You should have given her the finger! and then explained the code.

Sent by Joanne Wilkerson-Burke | 5:54 PM | 1-28-2008

Leroy,
Although Hospice was talked about with Leon, we didn't make it that far. And for that I am thankful, because he had very little pain, didn't lose a lot of weight, and died in the hospital, as he told us he wanted to do. But from all I have heard, Hospice is a good thing, with lots of caring people. One thing they do not know is when your time will come...
To Nikki...It seems I always look for you, to see how you are doing without Burge. Leon will soon be gone 9 months but I feel him here with me every day. It is a blessing for you and your son to be dreaming of Burge--It keeps him closer to you. So...keep dreaming. I don't dream often but maybe Leon will come back to me tonight...

Sent by Jane from Arkansas | 6:08 PM | 1-28-2008

Leroy,
I think that you are amazing and although accepting that you may one day need hospice seems rough now it will mean a world of difference in the end. Not that i think you are going anywhere anytime soon ;-) but my father passed while on hospice and honestly i cannot picture it any other way!
Keep fighting <3 Danielle

Sent by Danielle Majerczyk | 6:53 PM | 1-28-2008

Leroy, you are brave to consult hospice. People's visceral and intellectual reactions represent our hopes and fears. I only wish my brother had had the nurturing reality check of hospice-- he relied solely on his flailing family and therefore was never allowed to confront the conflicting 'codes'.
Strength and Peace
Rosetry

Sent by jron | 6:58 PM | 1-28-2008

Terry lived five weeks once treatment was stopped--four weeks at home and eight days in inpatient hospice. And some of them said some things I could be pissed off about, in hindsight--but they were doing the same thing the rest of us do: just doing our best to get from Monday to Sunday.

Hospice was a blessing, even though, as I've said before, I didn't find it particularly peaceful or spiritual.

Sent by Bruce | 7:06 PM | 1-28-2008

Well Leroy, this has been quite a day, as I anticipated, of caring, loving, responses to your terrible first ordeal with a very cold, calloused Hospice Nurse. Hopefully the support you have received here from all of us who love you has fortifide your courage and optimism.
How very wrong some doctors and care givers can be. Please - sleep well and talk with us tomorrow.

Sent by J C R | 7:45 PM | 1-28-2008

Leroy, as always, you're in my prayers.

Sent by Lisa Lindstrom | 7:50 PM | 1-28-2008

Dear Leroy- you have beat all the odds so far, so why should now be any different? Fight on!!

Sent by linda h. | 7:55 PM | 1-28-2008

I knew someone who was 'kicked out' of hospice care because they DIDN'T die....

Sent by Jeanne | 7:55 PM | 1-28-2008

That comment took my breath away and that's just from knowing you through your blog. Don't give up the fight. You give all of us courage!

Sent by Beth H. | 8:10 PM | 1-28-2008

Leroy,

I have followed your blog for the last few months, ever since the Ted Koppel special. After reading some of the comments from today, I went back and read your very first entry: February 2006. "Six months". Two years later, you are doing great, and you inspire me every day. I was diagnosed with Stage IIIC colon cancer one year ago next month.

Thank you for sharing your life with us.

Sent by Todd B. | 8:46 PM | 1-28-2008

For my dad, "hospice" meant 2 days; we would all have been thrilled if it had meant 6 months. I guess it all depends on your perspective.

Sent by Deanna Burns | 9:06 PM | 1-28-2008

Hi Leroy,
I've followed your blog from the beginning, but this is the first time I've sent a note. I volunteer with hospice in my community, and I want you to know, no one knows how long you have except our creator. I've been with patients that have amazed everyone with their longevity, and I do believe that their association with hospice has helped in that. When your pain is managed and you are comfortable and not anxious your life can go on. I hope the people associated with hospice will bring you hope and peace, and not anxiety.

Sent by Dee | 9:24 PM | 1-28-2008

Hi Leroy,
I recall when I was initially going through treatment and had not had a first scan to see how well the chemo was working, my Dad sounded kind of pessimistic in his comments about what the future might hold. I was shocked. It was like having the wind knocked out of me. I said nobody should ever take another person's hope away. Sometimes hope was the only thing that could keep me going. I can understand his need to brace himself for the worst, but I wasn't in the mood to hear it. I feel now like I take it as it comes. I am a pro at worrying so I have to force myself to forget for a while. I do the "I wonder if, or when" quite a bit, and I tell myself I'll deal with it when it comes. I know I am in a different position than you, but I like your optimism blended with a dash of preparation. I send you lots of hope.

Sent by Beth S. | 9:31 PM | 1-28-2008

Leroy,
I work in the healthcare industry...in a hospital to be exact...and it is true that hospice usually is called to help with end of life issues..believe me when I tell you that MANY people leave the hospital with hospice and then out live hospice...pardon the pun. Lots of times they find that there is no need, because the patient gets better. Please do NOT take this as a death sentence...remember 50 years ago EVERY cancer was a death sentence. Now we know that that theory is kaput! Cancer is not always an automatic death and neither is hospice.
I agree with claire...@#$% Hospice

Sent by liz Zimmerman | 9:44 PM | 1-28-2008

Dear Leroy,

sorry, but that really pisses me off ! How dare she say hospice is code for 6 months. She needs to find a new job.

That is not what anyone needs or wants to hear. Not to mention that she has no idea how long you will live.

My doctor told me not to read any statistics (this was after I had already read that I would be lucky to live another 5 years). I have been cancer free for almost 6 years now.

Perhaps you could work with a different nurse. The one positive thing cancer has done for me is to make me very assertive when it comes to my health care. I ask for what I need and want.

love, peace & hugs

susan
california

Sent by susan | 9:44 PM | 1-28-2008

I agree that people seem to be being very hard on this nurse and we don't know the full context of the conversation. If what she was trying to say is "your doctor has to believe that there is a good probability you won't survive more than 6 months for insurance purposes before you are admitted", that doesn't sound like she is telling you you only have 6 months but that she is simply talking about what the doctor(s) have to think to refer you.

You say the doctors have been encouraging you to talk to hospice-that is not the same thing as saying that the doctors think you are ready to go there. So I'm not clear that anyone is telling you they are betting on 6 months or less and, even if they are, it's all probability and hardly an exact prediction!

Though I know those words would terrify me too, I will say this - I would want my doctors to be the ones who were honest enough with me to tell me when they'd be willing to give that 6 month projection. I would want them to clearly tell me "I don't know if there's anything else we can do to stop or slow down your cancer". I think you need to be clear with your doctors that you want to hear that from them. That the conversation with the hospice nurse left you shaken this way, I would say, is because of what your doctors haven't said yet.

Finally I will say this. I know people that work and volunteer at a hospice and it seems like often patients don't come in until they have weeks or even days left, and they have been suffering terribly when hospice could have helped with that, and have many things left undone they might have wished to wrap up with a little more time and space to think about it--but they haven't because they are so terrified that entering hospice means accepting death. What entering hospice means is that you want to give yourself the best quality life you can- and, yes, to prepare yourself for death. Which is really a blessing to be given some time to do--many people do not have that.

Sent by N.R. | 10:11 PM | 1-28-2008

Dear Leroy,
There is only one person who makes the decision if one has six months, six years....or six days to live. Sometimes, being realistic does not equate, with hope/faith and optimism.
Ours not to reason why, ours not to do or die, but into the valley of death ........we are all going that way......sooner or later....now that is a dose of realism. All is well Leroy. All in the right time.
Blessings.
Wanda Amorose

Sent by Wanda Amorose | 10:37 PM | 1-28-2008

Leroy,

There are many hospices to choose from. I think I would want someone with at least a little more positive attitude. Don't let her talk you into "her code." Believe in your own code! We all do.

Sent by Carol | 10:52 PM | 1-28-2008

Leroy,
As Pink Floyd sing, Don't give in without a fight

Sent by Satish T | 11:07 PM | 1-28-2008

Thanks for sharing your story with us Leroy.

Sent by Krystal | 11:57 PM | 1-28-2008

Leroy-
Sign up for hospice, then sign your self out. Sign in again, then...sign out. There is no rule that says once Hospice becomes involved, you only have 6 months (try Googling "Hospice Cap"). Lots of people live longer. You can change your mind at any time and resume treatments. The benefit of Hospice is that you'll be accompanied by professionals who make living life to the fullest their business. If you happen to die along the way, they'll be there to support you and your family.

Sent by Maureen McEachen | 12:06 AM | 1-29-2008

Leroy - Thinking of you tonite. Only God knows that one Leroy - not anyone else. Who knows how much time any of us has? Til we are called to "go home" as it were, we have each other & Leroy - you have us. Thank You for touching our hearts. Enjoy today Leroy. It's all any of us really have.

Sent by Beth | 12:19 AM | 1-29-2008

WOW! Look at all the answers and responses Leroy! You believe in what you believe and screw what everyone else thinks. The only thing that matters is what you and Laurie believe because in the end...that is what counts! Live the way you want. Live the way Laurie wants. Do what you want to do. See what you want to see. It's about you! For once, make it about you!

Sent by Michael (Caregiver Survivor) | 12:45 AM | 1-29-2008

It is amazing to me how often people in the medical field make thoughtless comments that shock and crush their patients. And yet I believe they really do care, in almost every case. They just don't put themselves in your shoes and realize what their words will DO to you! Plus, I guess, they forget that you haven't been dealing with all this stuff on a daily basis for a long time as they have. I guess they develop a tough skin and talk among themselves about codes and statistics. But if it were them or their family member receiving the bad news? The punch in the gut would hurt just as much.Maybe a ittle more training in compassion is in order? Or is that a subject that can be taught? Seems like it ought to come naturally.

I agree with those who suggest talking with a different hospice nurse. It sounds like they can help you find pain relief. And you can always decide to leave and try whatever treatment options you and your doctors can turn up.Seems to me you are wanting to keep fighting if that is possible. We're right here with you. Thank you for allowing us to be with you and learn from your experience.

Sent by Doris | 1:12 AM | 1-29-2008

Leroy, for us hospice meant we could get whatever meds and equipment were needed to keep my husband comfortable. They were fantastic. They taught me what to look for and in some respects prepared me for what was going to happen. We only had them for 4 days, but they did everything possible to make his last few hours as comfortable as possible. I will always be grateful for them.

Sent by Cindy | 5:24 AM | 1-29-2008

Leroy
First and foremost THANK YOU, you have given all of us (I know me for sure) on this long journey a gift, starting with the tv special and continuing with this blog. For me you have helped me realize that my feelings are okay. I am 41 going into my 8th year on this journey (I have had 3 occurences). Thankfully at this time I am in NED land, for us metsters NED land is not such a bad place.
It is now 5:47a.m. and I have not slept one moment all night. I am fixing to go in for a 9 or 10 hour work day. When I read your post yesterday it really hit home with me and got me thinking (yes I have already done a will and a living will my wishes are well documented). First thing I did after I read this post was forward it to my closest buds (some of which are nurse's that I rely on for support) I told them first off if anyone especially a hospice nurse told me that then #1 they better protect the nurse because if my mama is still on this earth, even wheelchair bound she would do great bodily harm to the poor thing and #2 then they would need to protect her from the rest of my family and friends. Me, I came to terms a long time ago that what will be will be. BUT you sure did get me thinking all night long.
The second thing that you brought to mind for me was my outlook. I have had the notion that "KNOWLEDGE WAS POWER", I felt the more I researched and the more I learned that it would give me more resources or power to win this battle. I would be stay one step ahead, always keep an ace in the hole. After reading yesterday it had me thinking is "KNOWLEDGE really POWER" or is "IGNORANCE BLISS"? Please don't get me wrong I am a fighter and will be to the end, but sometimes I wish I just didn't know so much, or that I haven't seen so many people lose their battle with this war. I lost 2 very dear friends and 2 aquaintances in 6 months from this darn war last year. I do work in a hospital so it is always there, it has given me enough knowledge to be really dangerous, also GOOGLE is a powerful tool, I am always printing out info and putting it away until my next drs appointment. I do wait tho until the dr asks me if I have any questions, then I pull out the folder and write notes on each of them for future reference. Not that it is really necessary treatments change every day, I just think this is my way of feeling like I still have some control of this situation.
8 years ago I was an very OCD person, everything was BLACK & WHITE. After my first bout with cancer I was introduced to GRAY. I can't say that I welcomed him with open arms, in fact I did my best to keep him at arms length. After my second bout 36 months later I was reintroduced to GRAY. I still don't like him but after my third bout 36 months later (I believe I am seeing a pattern here) I have come to accept GRAY. In fact I believe being able to see lifes GRAY areas has made me a much better person, mother, daughter, sister, aunt and friend. SO ONCE AGAIN LEROY I SAY THANK YOU FOR YOUR GIFT! I know it is of no comfort to you but you have helped many many people fight their way through this journey/battle and you have helped many people understand us while we are on our journey/battle. Please forgive any mis-spelling I am a little sleep deprived, but in a good way. May you find peace with your life's journey.

Sent by Cheryl (Panama City Florida) | 7:16 AM | 1-29-2008

What a great opportunity to educate all of us about what hospice care means! The word cancer used to be uttered in hushed tones. We still use code for death. Hospice care may actually allow us to die the way we want to rather than the way so many of us fear. Continue to make the most of this opportunity to talk openly about birth, life, death, dying and how we all want to make a difference.

Sent by Susan | 12:00 PM | 1-29-2008

Leroy,

Hospice can provide lots of services and support. And if things are going better, some folks remain in hospice care for much longer than that original six month estimate... it's not a six month contract with hospice! Many folks wait too long, and end up with hospice for only a very short time - even though hospice could have been helpful much earlier. If you are not receiving aggressive treatment, and are a candidate for hospice... think of it NOT as "giving up" in any sense of that term. Think of hospice as a way of aggressively seeking to preserve your quality of life for as long as you possibly can.

Cheering you on from snowy Massachusetts,

Dorothy

Sent by Dorothy | 12:26 PM | 1-29-2008

Leroy,
I have worked with hospice for many years. The 6 months comes from Medicare. They require an MD to certify that the patient has less than 6 months to live. You probably qualified when you were first diagnosed.
People go into hospice because they have had all available treatments and need symptom management. I have seen people live better lives on hospice than they did before because their symptoms were improved. People have actually done better off the tx than on it. If a new drug for your cancer becomes available you can opt out of hospice and go for it. Hospice isn't a death sentence. No one can say how long you have to live. Remember the 6 months is Medicare's time frame, not yours. Linda

Sent by Linda | 1:57 PM | 1-29-2008

Thank you for helping me understand what my son is going through, (stage 4 Lung) along with information on procedures I was unfamiliar with that have helped in his treatment- I rejoice with you at successes, cry with you in pain and pray for you daily, that God might grant you strength, and happiness with those you love.
Yesterday, I felt that nurse should be fired, but knowing how good Hospice is, I would say she definitely needs some sensitivity training, at the very least- what we need is hope,(already knowing the possible outcome) and not "procedural code" time lines-I can only wish she is never in that position. God bless

Sent by June | 2:01 PM | 1-29-2008

Hi Leroy & the gang:

My thoughts about your Hospice blunt introduction and the many comments is why didn't anyone of us cyber friends ask Leroy if he knew about the 6 mth time thing? Guess we all assumed your doctors had told you that important detail and it wasn't our place to add to this shocking news. But I think Linda at 1:57 pm 01-29 explained Hospice "coding" very precisely. I will save that for future reference since my mom has recently signed up for Hospice care (stage IV lung). I hope she can find more comfort now and live better without the chemo side effects.

Another insurance coding used in the medical field that can be a breath-taker is the box checked by Pelvic Mass on the signout slip the nurse handed me after my recent ultrasound. My Dr. didn't use that wording while we very briefly talked, but rather he said lets consult next week & we can go over all this then. He didn't have time & wanted another blood test done before we met again. (CA125, another Oh Oh code). So my husband & I are going to consult with him on Thurs to find out what he suggests we do. In the mean time I'm trying to stay calm.

Sent by Marge from Texas | 8:59 PM | 1-29-2008

Dear Mr. Sievers;

I've been following your blogg since November of 05. That is when I was diagnosed with a brain tumor, an Anaplastic Astrocytoma Grade III. You have given me a great deal of inspiration and hope over the last 2 years. I saw the Ted Koppel special ???Living with Cancer??? and that was also an eye opener. I???ve since learned a great deal about and your ???escapades??? you???ve seen and done a great many things. Through your blogg you???ve brought this disease to the forefront where it should have been years ago. You have also brought understanding and hope to many, many individuals fighting this battle. Stay strong and positive, I would not expect anything less from you. You never know?

Best regards,

Ivan

Best regards,

Ivan Gil

Sent by Ivan Gil | 10:32 PM | 1-29-2008

Leroy:
Well friend, you've done it again! Your painfully honest blog entry has generated many emotionally-charged responses. You???ve got quite an army standing beside you Leroy; count me in! As much as I dislike the nurse???s conclusion, I have once again learned from your experience. I suspect that I???m not the only reader who was educated about Hospice because of your blog entry. You are such a treasure!
Oh ??? and regarding the 6 month thing -- buy her a perpetual calendar!
Sent with a gentle hug
Rhonda H

Sent by Rhonda Howard | 11:32 PM | 1-29-2008

Leroy,
I have been reading your posts for a long time and I don't usually comment but I had to with this. My mother-in-law has had hospice TWICE. Once two years ago and then over a year ago. They even brought a hospital bed. Well they packed up and left after 8 months. And she is still with us. Don't let them tell you how long. They don't know. No one does but God.

Sent by Nancy | 8:28 AM | 1-30-2008

I've been wondering... There was clearly alot of harsh sentiment towards the nurse, but with Leroy's push for honesty, did he convey that to her and she was trying to give an honest comment? Sure no-one knows, but it sounds like she is translating for the doctors guess.

I am hesitant to post this since I'm not in your shoes. But it has struck me that a great strentgh of Leroy is seeking honesty - whether the answer is one he wants to hear or not.

Again, I keep praying for God to work through the doctors and to heal Leroy.

Sent by Geoff | 11:10 AM | 1-30-2008

Leroy -
Your version of hospice is right. Her, while it is the business/technical/legalistic version isn't wrong, it isn't right for the patient. So...in 6 months they'll re-up you and your benefits. I've taken care of several people who "had to" keep re-upping their hospice contracts, because they were still going strong.

Your blog is a blessing to us all who read it.
Peace and love.

Sent by Greta C. | 8:36 PM | 1-30-2008

I'm a hospice nurse and cringed when I read your nurse's "code" comment. The heart of hospice is just what you hoped it would be... help to manage all that comes with advanced illness. It's not about when death will happen, but how can hospice help you and your family make the most of whatever time you and they have yet to share. And hospice has much to offer along those lines.

Sent by Mary Murray, RN, Certified Hospice and Palliative Nurse | 5:04 PM | 2-1-2008

I just stumbled upon your blog while searching for a quote. I read several pages of them and the comments, and you will be in my prayers also. I don't agree at all with the Hospice nurse, I like to believe Sylvia Browne about how we plan out our life on the other side before we come here. So you are the only one thats knows when you will leave here. I dont think Hospice should even mention a time line. We all build our life chart with our guardian angel and other higher beings to take on challenges here so we can learn and progress and advance our souls for GOD. We have all lived many lifetimes before, and we will continue to live more if we choose to. Prayer works, and so does getting in touch with your spirit guide to help you along the way. My prayers go out to you always.

Sent by Frank | 12:06 AM | 2-6-2008

I too am very disappointed in this hospice nurse. My Mom had Hospice and they in fact let us know that the "six month thing" was not what they are there for. I sincerely wish you would of had a more positive experience.

Sent by Rose | 6:27 PM | 2-6-2008

Dear Leroy,

Sometimes the very people entrusted with patient care can be just as careless with their words (and revelatory of some hard-shell attitudes) as laypersons. Most are kind and wise, though, I think. In lieu of apologies you may never hear, I offer a proxy one.

Sometimes I read your blog, and am touched by all that you write and by those who write to you.

To my surprise, I found among letters posted to your site the name of someone I remember from University of Texas days: Shonda Cortez. Of course, it may be another person by the same name . . . No matter, I guess, since this is a place where many people communicate love and hope and support to you and, as you probably intended, to each other. Count me among your supporters.

Dear Shonda, if you come across this note of mine, please know that you and your loved ones are in my thoughts and prayers.

Sent by Juliet George | 3:37 PM | 3-23-2008

I am so very, very sorry. Sue

Sent by Sue Perdew | 11:22 AM | 8-16-2008

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