Dear Leroy,
The first thing I do each day is to check and see how you are. I hold a special shell from the beach as I read your blog. I look at your picture at the side of your blog and I send you Love and Light each day.
xxoo
Vi

Sent by Vi | 8:00 AM ET | 03-11-2008

I am so sorry that pain is involved. Thoughts and prayers for you.

Sent by Susie R. from Col, OH | 8:00 AM ET | 03-11-2008

Dear Leroy,

Sorry to read your pain has not improved after all. That is fatiguing in itself. Movement and strengthening may help. Keep after your doctors to try to fine a combination that works. I understand your desire to stay away from the big guns... after watching what the did to my dad.... very very scary.

Hang in there.

Sent by Sue Chap | 8:14 AM ET | 03-11-2008

Morning Leroy! Hope your day gets better and more comfortable as it progresses. Can the doctors give you any time frame as to when the major uncomfortable conditions may subside? You know, what you can look forward to?
While I have not been on pain killers, I am taking myself off of most of my medication. One thing is that I developed a very mean, aggressive rash. Doctor nonchalantly prescribed a salve (which cost $44+) and I obediently used it as prescribed. Three days later, I had a red. raging, mess which was spreading all over the area. I stopped the salve and called the Pharmacist ('cause it was the weekend and I could not get a doctor and did not want to call 911 - yet). So now I have just stopped it all, and the rash seems to be geting better as long as I wear loose clothes and keep it dry.
I also stopped another widely used drug which was prescribed when I had the stroke last Spring. I realized that my legs wouldn't function properly and I was really feeling like I had grown old in the past months. Of course I blamed it all on the Stroke - but -? I have stopped the drug and beginning to walk and feel close to normal once again.
Are we over-medicated?
Leroy you have been living with pain for so long now, I wonder how long will you be able to endure? Sounds good that you are moving around so much. From bed to chair, then walking with the walker -. That sounds like progress. Freedom from such pain will free up your mind for more creative thinking and writing once again.

Sent by J C R | 8:15 AM ET | 03-11-2008

You have earned the right to throw a pity party and we are there with you! Just a couple of thoughts..are you able to sit in a tub yet? Getting in and out might be difficult but the water does help bear the body weight. Maybe even a pool at a rehab center. Also consider the air beds that will shift your body on regular intervals. They can be rented. ANYTHING that gives some relief is wonderful. I hope you have a more tolerable day.

Sent by Susan | 8:28 AM ET | 03-11-2008

You know those kneely chairs? the kind that you kneel and rest your stomache on? I found with my back problem that this really helped relieve the pressure of sitting on my bum. Not if you can't, but worth a thought?

Sent by Becky | 8:30 AM ET | 03-11-2008

You are my hero. When I'm very scared and feel like nobody else could understand, I think of you and your courage and it's a sure way to get calm. I think all of us who read your blog would gladly take a bit of your pain to make it better for you. Here's hoping you get relief soon.

Sent by MG | 8:36 AM ET | 03-11-2008

Leroy, wish I had some good words of wisdom. Just hang in there guy. Were all trying to strength your way.

Sent by dorothy in oregon | 8:36 AM ET | 03-11-2008

I imagine the pain nerves in your back as tiny muppets (think Oscar the grouch in an especially bad mood) ... and the pain is them saying "Yo, Dude! We're getting bored here. Time to move!" Then you get comfy, start watching something on TV (oh those writers can't produce fast enough!) and the muppets get bored again and start ravaging again.

We like you oriented and we know Laurie does too. But we also like you pain-free. Where is the balance?

Maybe you can call Frank Oz for advice on calming muppets???

Sent by Liz L. | 8:55 AM ET | 03-11-2008

My heart is open and my prayers are with you Leroy. I've suffered from dibilitating back pain for many years, so I can't begin to imagine what you are dealing with. I hope that your next steps will subdue some of it. One word on pain that may be your doctors have already told you, but your body or mind has a way of adjusting and coping with the pain after getting used to it. The acute stage, in other words, goes away.
My prayers for you.

Sent by tim m in rochester | 9:06 AM ET | 03-11-2008

dear leroy, just sending prayers for your strength to tolerate the pain. I remember pain and the fear of doing something that would make it worse than it already was. as always good thoughts and prayers are going out to you.

jan

Sent by Janice Goldberg White | 9:24 AM ET | 03-11-2008

I am learning so much from you and I appreciate so very much your willingness to let us into your world. Thank you Leroy.

Sent by Libby in Belmont | 9:30 AM ET | 03-11-2008

Dear Leroy,

So sorry to hear you're uncomfortable constantly. That, in itself, is a drain on your nerves and your body. My prayers are that you find some relief and healing soon.

Sent by Connie | 9:34 AM ET | 03-11-2008

Leroy, we're always here, always with you, for every point on your journey.

Sent by Gretchen Hoag | 9:44 AM ET | 03-11-2008

You're in my prayers as always, Leroy!

Sent by Amy in NJ | 9:46 AM ET | 03-11-2008

Leroy, we can get used to anything ... with time. Doesn't mean we like it; we just get used to it. Think positive thoughts, especially ones with little umbrellas in festive drinks, sunshine and beach sand, and a warm breeze on your face. Ooops, I just went there mentally and forgot it was 30 degrees out. Hang tough ...

Sent by Pat Z. | 9:51 AM ET | 03-11-2008

I understand your concern about using any pain meds, but maybe you should reconsider. My husband felt the same as you after being hospitalized for 6 months and on hundreds of meds. He hallucinated on several occasions and we even thought he'd had a stroke because of that. When he finally left the hospital he demanded that he be off everything so his body could detox. But his back and bone pain was something that needed relief, so we kept trying different meds to get the lowest dose that would work but not create any other issues.

Being in pain makes such a difference in how you face each day, Leroy. Easing that pain allows you to find that comfortable place to rest. Your body needs that ... you need that. Please think about discussing the options with your doc or see a pain management specialist.

My prayers continue for you and Laurie.

Sent by Dianne in Nevada | 9:57 AM ET | 03-11-2008

Hi Leroy. How sorry I am that you are experiencing pain - I am sending you healing thoughts.

You are an extremely special individual.

Sent by liz | 10:05 AM ET | 03-11-2008

Ah yes, what a chore to get comfortable, but...moving from one place to anoher IS a form of excercise, right?

I know that is sort of like putting lipstick on a pig, but we always have to look at the positives in life.

Peggy

Sent by Peggy | 10:11 AM ET | 03-11-2008

I had surgery a few years ago and couldn't get comfortable in bed. I know the feeling. It's hard and tiring. But the fact that you are moving alot is still good. So there is a silver lining there. Try any weird idea you can think of. Lying over an ottoman helped me! Hang in there Leroy.

Sent by DiAnn | 10:13 AM ET | 03-11-2008

Pain sucks...I hope it gets better/bearable. A good P.T. person might be able to make suggestions for comfort measures, such as they might be. A hospice PT would be even better...it is their specialty.

Sent by Sandra Yudilevich | 10:20 AM ET | 03-11-2008

I remember lying in my hospital bed after my thoracotomy and asking my husband to help me reposition, for the third time in 20 minutes. He said to me " I know you are just trying to find a comfortable position, but you need to face it, there isn't one" I think that is when I started to cry. But eventually, slowly, I did get better. Go ahead and have a pity party, if anyone deserves it, you do.

Sent by Theresa Lovin | 10:44 AM ET | 03-11-2008

Hi Leroy,
Like many other people, I don't email you often but read you blog daily and my heart is with you. I know that I will be where you are,and your blog makes me feel less alone. I also can not have anymore RT to my spine. I have multiple myeloma. I don't know if you are open to it, but I would suggest acupuncture and or a TEMS UNIT(Ask your PT about it). I have gotten relief with both. China gel and biofreeze gel also have given me some relief. A combination of methods may be your best chance of easing the pain. The hospice folks are also experts at pain relief and may be more knowledgeable about pain than your oncologist. I use to be an oncology/hospice social worker, one of G-d's little jests, anyway even if you don't like their prognosis take advantage of their knowledge. Fight as hard for pain relief as to survive. Western medicine is great, but when it comes to pain don't be afraid to think outside the box.

Sent by elissa rosenfeld | 10:49 AM ET | 03-11-2008

Leroy: I think you need to get in touch with a pain specialist. Pain in the 21st century is unneccessary and there are certainly options to deal with it that don't turn you into a zombie. MK.

Sent by Michael K | 11:01 AM ET | 03-11-2008

So sorry to read that your pain and discomfort are your constant companions. I do believe in acupuncture as was already suggested. It is not an instant cure but over time, it really helped me. When I need it, I go to a Chinese doctor. He treats many non-chinese and also uses traditional chinese herbs, potions and such to treat his chinese patients. I must confess that I felt worse after my first treatment but I came back again and again and gradually the persistent and debilitating pain went away. Might try it. Have them come to you.

Continued prayers for you and Laurie.

Sent by Al Cato | 11:19 AM ET | 03-11-2008

Leroy, if you want to have a pity party, I'll be right there with the plastic forks and party hat. I started reading your blog about 10 months ago when my father was diagnosed with lung cancer (he died 4 months ago).

I hope they plan on radiating the spine mets asap, because as you know, that radiation may reduce your pain considerably.

Just know that there are people like me, who don't often comment, but follow you, think about you and respect you for all that you were, and all that you are, even at this very moment.

Adrian P.

Sent by Adrian P | 11:25 AM ET | 03-11-2008

Dear Leroy,
Whine all you want. You have earned the right! Praying for you.
Charlotte in Rural Ridge, PA

Sent by Charlotte Kewish | 11:27 AM ET | 03-11-2008

Dear Leroy/All,
Sending prayers and healing strength.

Sent by Sasha | 11:55 AM ET | 03-11-2008

Leroy,

Consider contacting hospice. They are pain control experts and will be much more attentive to your personal needs than a hospital or outpatient situation can be. Nobody should have to suffer intractable pain.

Blessings.

Sent by Diana Kitch | 12:22 PM ET | 03-11-2008

Leroy, Hope you find a more comfortable spot soon! It is hell being in pain all the time. Hope your strenght is coming back with all the walking. Thoughts, Stan

Sent by Stan Wozniak | 12:28 PM ET | 03-11-2008

Gee, Leroy, if you can't whine to us who walk this road with you, what are we here for? This never ending round of what's next makes us beg to just sit this one out and regroup but that is never an option.

Sent by glenda | 12:31 PM ET | 03-11-2008

Whine away. I hope you find a comfy place soon.

Sent by Gyla | 12:34 PM ET | 03-11-2008

that sucks. You're allowed to whine all you want.

Sent by N.R. | 1:07 PM ET | 03-11-2008

Darn, I hate that word "whine," Leroy. Telling others you are in pain is NOT NOT NOT whining. Nor are you engaging in a "pity party." Let's kick that language out of the discussion here, once and for all.

I agree with others - there are numerous pain meds which might help, and which might not have such a drastic effect. I encourage you to do some more experimenting, and talk to a pain management person.

You are in my thoughts.

Sent by Wendy | 1:09 PM ET | 03-11-2008

Leroy, you are fearless as you continue to push forward. You're in the hearts and thoughts of so many people that there is almost certainly one of us taking each step with you.

For dealing with unrelenting pain, you may find help in The Pain Cure by Dr. Dharma Singh Khalsa. It gives an excellent description of the mechanism of pain, and how to best use the various drugs available. Just as important, it offers a wealth of information on mind-body and nutritional "treatments." I know it's tough to focus on reading if you're already in pain, but maybe a friend could help cull relevant information for you.

Sent by Patte L. | 1:11 PM ET | 03-11-2008

Hi Leroy -

As a veteran of the cancer wars (breast and rectal), I've had a few surgeries. None have been as dangerous as yours, but the discomfort seems to go with the surgical territory. One thing I found that helped was using a recliner. It took the pressure off my low back and made sitting a bit more comfortable.

I read your blog daily and marvel at your patience, courage, and just plain (no pun intended) guts.

With hugs and prayers -
KathyS

Sent by Kathleen Shapiro | 1:33 PM ET | 03-11-2008

Keep talking to your doctors about different pain meds. Different classes of drugs can be quite different. There is a lot of stuff out there, and not all of it is quite so heavy-duty. OTC drugs weren't cutting it for me any more, and I thought I had to just live with it because I like the side effects of pain meds less than just dealing with the pain. But my doctor recommended Tramadol (generic name) and that has been fairly good at cutting my pain, with a minimum of side effects.

Pain is so tiring. Don't give up on making it more manageable.

Sent by Hans | 1:55 PM ET | 03-11-2008

Dear Leroy,

It's one heck of a way to spend the day. It gets a bit tiring after awhile. If you haven't already, I encourage you (and your medical team) to explore some anti-anxiety drugs. They have helped me greatly get through both physical and mental pain. They have also been a cure for a bad night's sleep.

Please take care,
Ed Steger

Sent by Ed Steger | 2:24 PM ET | 03-11-2008

Leroy,
Leroy,
Lately knowing what year it is is not always a comforting thing. Do what you have to do to get pain relief.
Susan

Sent by Susan | 3:20 PM ET | 03-11-2008

Yuk Yuk Yuk !!! If it isn't one thing it's another. I know you'll hang in there. Better days are ahead.

Sent by linda h. | 3:27 PM ET | 03-11-2008

I so understand what you're talking about. You are entitled to whine as much as you'd like - after a while it is psychologically and physically exhausting putting up with chronic pain/discomfort. I keep waiting for a really "good" day and have come to the conclusion that I may have to settle for "less sucky than yesterday" days.

Sent by Marcia G. | 3:41 PM ET | 03-11-2008

Hi Leroy,

Hoping your pain subsides. We will pray for you and your doctors to find a way to help you be more comfortable.

Sent by Marcy in NJ | 4:16 PM ET | 03-11-2008

Dear Leroy, I've been following you on and off ever since that wonderful show you did with your pal Ted Koppel moderating. My stepsister had been diagnosed stage four with lung cancer at the time and I wanted to pass on some comfort and hope to her. She was courageous and dignified right up to the very end (last November). You are totally not in denial - it's what makes your sharing on this blog (and the show) so valuable I think. It's hard for the body to rest and heal properly when you are in too much pain. I agree that knowing the day of the week is sometimes overrated. There is a middle place where you have pain drugs in your system and they make everything easier to bear. The OTC stuff just adds the drug without really touching the problem. I hope you can get to that middle place soon. Maybe all pain will not be gone but it will be much more livable in intermittent amounts.

Sent by Linda Knower | 4:54 PM ET | 03-11-2008

I'm just writing to say thank you again for the time you take and the honest thoughts you share with us. I'm always hoping that you feel no obligation to be cheerful for this blog when you feel like crap or optomistic when optimism just isn't there. A good deal of anger would be a fair response to dealing with pain for so long. Sadness , anger, alot of irritability all there for me when dealing with a physical limit and any degree of pain.

Does distraction mitigate it at all? We just watched The Great Escape with Steve Mcqueen and other great actors and what an incredible story it is. It took me totally outside of myself.

Regards from nancy O

Sent by Nancy Oliveri | 5:04 PM ET | 03-11-2008

Oh Leroy, hope you have figured out how to be more comfortable than you were this morning. My husband, who reads and discusses your problems every day with me, is concerned. He had spinal surgery in 1950 and has lived all these years with six Titaneium (?) screws in his back because of a horse training accident in '47. He has never been free from pain but has lived a very normal, productive life every since. Now, in his later age, the pain is worsening and yet, like you Leroy, he will not give in to heavy pain remedies. They have suggested that they go in and remove the screws but he is paranoid about the thought of them going into his old arthritic spine at his advanced age. You Leroy are much younger, yet Cancer is involved in yours, so the pain is different. He asked me to tell you that he has learned to live with the pain, (which he says is constant),but that the nerves eventually get numb to some of the worst areas. Yours must be horrible because you have had so much surgery and invasion. Please remember that you are also a very brilliant man with a highly developed brain attached to the top of THAT spine that has been invaded. Please do not lose heart by he constant pain. Your mind is stronger and will triumph! Just a note from two very concerned people who care about you.

Sent by J C R | 5:14 PM ET | 03-11-2008

Glad to hear you're walking. That sounds like a pretty big positive step. Like many others said, you're allowed to whine. I believe that you have earned the right to whine. The pain thing just bites. I don't know too much about how to address it. When I was in chemo I had terrible pain in my front teeth and the roof of my mouth. I asked my doc for something and he told me that "you shouldn't be having pain there." Oh, my mistake. I'll make sure to tell my nerve endings that they are incorrect. Keep looking for the pain answer. Pain saps energy that you need elsewhere.

What a great community you have created on this blog. Talk about people who "get it".

Sent by Dave U. | 5:18 PM ET | 03-11-2008

Leroy,
I'm with you, in spirit.
Jane

Sent by Jane from AR | 6:45 PM ET | 03-11-2008

Hey Leroy --- moving target is hard to hit. Whining is okay... actually cranky can be okay sometimes as you move around. However, eventually you will run out of gas and have to "light" somewhere. We will be resting in peace long enough.. so moving to find comfort can be a good thing :-)

Sent by Jo Ann Baswell | 6:58 PM ET | 03-11-2008

I'm directing today's prayers for you, asking for a break in the pain cycle.

In the meantime, I'm joining the chorus of everyone who has encouraged you to get/ask for as much help as you need with pain management.

Sent by Janice J. , Los Angeles | 8:41 PM ET | 03-11-2008

Dear Leroy, please Google zero gravity recliner. My husband broke his back a couple years ago. This chair is IT! Wishing you much comfort--soon. You are always in my thoughts.

Sent by Donna Peterson | 9:10 PM ET | 03-11-2008

Dear Leroy, I read your blog daily and honor your eloquence and sharing. Your courage and grace touch my heart daily. You have received some good ideas in response to this blog........I surely support advocating for better pain management. It takes lots of energy to do that....but you deserve it! Prayers being sent for you and your wife.

Sent by Terry Gremel | 10:17 PM ET | 03-11-2008

My thoughts are with you and Laurie. You are a inspiration to others Leroy. Thank you for sharing your life with others.

Sent by Rose | 11:01 PM ET | 03-11-2008

Hi Leroy,

If you can do it - the positions and getting in and out of them - it seems like trying to lie over a large, cushy ottoman on your belly side, or trying one of those kneeling style desk chairs might help. It seems like anything that would take presure off of your spine would help. Lying on your back or side, sitting, or standing would just put pressure on your spine in different ways, and would just make any discomfort worse.

Whatever you try, I hope you find some relief - soon. The moving around to regain strength is a good thing. Hang in there.

Sent by Lilly T. | 11:10 PM ET | 03-11-2008

Leroy - I'm amazed at your strength to persevere through the pain and continue your walking. We are behind you all the way.

Sent by Marie | 11:39 PM ET | 03-11-2008

Dear Leroy,
Have you tried a Zero Gravity chair? They are sold at Back Stores. Expensive but well worth it to be able to sit without pain. Hope this helps :)
Wendy Narzem

Sent by Wendy Narzem | 1:43 PM ET | 03-12-2008