Hi Leroy and all

I???m sorry about your constant pain, Leroy and wish I could do something about, just as you do. I am also sorry about the frustration of Dr. Lynn, Sheera and others about not being able to do much about preventing cancer and dealing with the multiple predictions that we and other cancer survivors face. So far, I???ve been graced to avoid most pain and many of the other consequences of my usually deadly cancer. I???m in the first circle of hell and many of you are much farther in.

I regret not following up on earlier suggestions that we find a way to take action together concerning those things that can be done to make our lives more bearable and affordable regarding the cost and reliability of insurance, the prices of pharmaceuticals and similar unnecessary and curable burdens, Frankly, when challenged as to what to do, I didn???t have a satisfactory answer as to what a very small and scattered group of survivors could do to effectively confront very large, well organized and well connected interests.

As Sheera has pointed out, The American Cancer Society???s Action Network has now stepped in to give our efforts much greater leverage by calling on the presidential candidates to undertake universal health coverage once one of them is elected. They are asking us for both petition signatures and our stories to support their efforts (go to acscan.org) for further information. Our stories (yours more than mine) will help in this effort. It???s an important one in part because ACS and the other major health, aging and medical associations that are a part of this effort are large enough to hold the next President and congress to account once elected.

However this is not all that we can do. Once they have our letters and names, we still won???t have an interactive network and sub-networks for particular cancers as suggested by Dr. Lynn, though which to educate and advocate. Some of these are already provided by individual cancer organizations, most effectively for breast cancer and leukemia/lymphoma. Many of these primarily promote research funding much more than other forms or advocacy, ACS???s new stand, along with its allied organizations is a major breakthrough. Does it go far enough?

An survivors/caregivers/friends network could, in addition to promoting cancer awareness, discuss such issues and give us the basis for more of a public voice- especially on moving out of our support groups and beyond research advocacy to matters that affect us and others now rather than in the future. Personally I am preparing to start my own blog that could conceivably help in this effort. I am inexperienced in this. Any suggestions? johnshippee@hotmail.com

Vaya con Dios

John Shippee
Atlanta,GA

Sent by John Shippee | 8:11 AM ET | 09-21-2007

Sorry that you cannot get any relief from your pain. It is debilitating when you can't get restorative sleep. There are pain management clinics but I'm not sure what they offer beyond the obvious- drugs, massage, meditation, acupuncture, etc. You might explore this to see if you can hit upon something that will bring relief. I have used acupuncture many times to bring relief but my pain has been in a specific location that then radiates outward. The meridians (nerve pathways) in our bodies are the focus of acupuncture so you might try it.

As cancer patients, coping and adjusting are just part of the process. You are doing that even though it is not to your liking. Who would have ever thought, in our youth, that our coping and adjusting skills would be elevated to an art form or that pain would be our constant companion!

Blessings and prayers. Have a good weekend.

Sent by Al Cato | 8:18 AM ET | 09-21-2007

Good morning Leroy,

How neat! Deer in the yard for your viewing pleasure. I guess, I am jealous about that. Poignant comparison: deer with a limp, your pain. I am sorry about your constant pain, and hope there are other avenues for pain control that have not been explored yet.

Pain does take a toll.

Best to all for the first weekend of fall.

Sent by Sue Chap | 8:24 AM ET | 09-21-2007

Pain was my first symptom of my met to the hip. My PCP and I thought it was bursitis. I was in heavy denial that it could be a met. Then my cancer marker number went up, and my oncologist ordered a PET scan. The good news is, that is the only place they found a met. The even better news is that I am currently NED, and my hip doesn't hurt anymore. The bad news is, I missed three days of work last week with what we think is a back spasm. I don't think I have felt pain like that ever in my life, and I have had a mastectomy with tram-flap reconstruction. Thank God for controlled substances. I will have an MRI on Sunday to see if they can see what is up with my back.

I am sorry for your pain. Keep your chin up, and stay with us. We love you.

Ruth

Sent by Ruth from Virginia | 8:25 AM ET | 09-21-2007

I was turned on to your commentary here a few months ago, Leroy, and I read it everyday. At the time I was pointed here, I had been diagnosed with mets to the lungs from head and neck cancer. I was told I had 10 months left to live, with a 15% chance that I would live 2 years. Since then, after almost three months of living with that 'Dead Man Walking' feeling, I have been advised they made a mistake. I am cancer-free at the moment (if they can be believed...and I choose to believe them this time as strongly as I believed them last time :)).

Thing is, when I was dying, I advised one or more siblings who suggested I must make a 'list' of things to do, it was never about that.

I wanted to spend that time with people I care about doing things that we can do and enjoy.

And that was the end of that.

I know we all deal with it differently, and geez, you have been after this for much longer than those few short months I was, in terms of being on the wrong end of a rifle scope (I'm finally getting to your deer reference :)), but you cannot be a deer in the headlights, you cannot see yourself as a victim.

It is what it is. Unlike the deer, you do not have to accept what has happened and move on with it as a permanent handicap. You have shown that you -- and all of us -- can choose NOT to be that antlered beast. You do not have to limp into doom, sir.

You choose not to. If this blog were about how you were quitting, no one would be reading. You do not quit. You do not limp into doom.

Celebrate yourself, my friend! You are a hero, a real hero.

Now, inhale that for a minute and then get over it. You have much to do.

Hope and humor.

Joe

Sent by Joe Alvey | 8:29 AM ET | 09-21-2007

I'm so sorry you're in pain. You have talked about cancer not always being visible or pain the main symptom. I know this is hard on you. Perhaps massage or reiki or yoga or some other method will bring some relief. Here's hoping.

Sent by Ann | 8:32 AM ET | 09-21-2007

Oh I'm so sorry to hear this Leroy.

Love you my "friend."

Sent by Vicky(NY) | 9:00 AM ET | 09-21-2007

Good Morning Leroy and All,

Leroy, I am so sorry to hear that you are still in so much pain. I guess we are all a little like that old buck with the bad leg that comes to limp around your yard. We are banged, bruised and in pain but we still are out there limping on. What other option is there?

Leroy, if your pain does originate from a nerve being irritated, your doctor may be able to do a nerve block that would at least give some temporary relief. Also the medication Nortriptyline, which is in the class of antidepressant,is also often effective in controlling chronic nerve pain. This medication can also help with your sleep problem. It might be worth a try.

To All, This morning I am asking for your help. I received an E-Mail from Cancer Consultants stating that in July of this year The Centers for Medicare and Medicaid Services issued a national coverage determination which denies coverage for medications like Procrit that stimulates the production of red blood cells for chemotherapy patients unless their hemoglobin drops below 10g/dl. This move can jeopardize the schedule for chemotherapy doses because some cancer treatment centers will not administer chemotherapy if the patient's hemoglobin drops below 11g/dl.
Therefore, those patients would either have to wait until their red cell count recovers or receive blood transfusions or pay the hundreds of dollars for Procrit injections out of their own pockets. Please contact your legislators and tell them to reverse this decision and stop whittling away benefits for Medicare and Medicaid cancer patients. They do not need to be trying to balance their fiscal irresponsibilities on the backs of Cancer patients and their families. I have already sent my letter to congress. Please join me in this effort.

My brother, Jim and his wife Tynia are in town now. We were planning a trip to the mountains but they were exhausted after their 600 mile journey. Jim is a prostate cancer survivor and I am battling Uterine Cancer. So like that old buck we just decided to limp around Charlotte. We are planning a tour of Latta Plantation today. And we would even walk in the rain---if we could get some!

Have a day of happiness, everyone. And please, do a rain dance for us!!

God Bless.

Eileen Pruyne
Charlotte

Sent by Eileen Pruyne | 9:18 AM ET | 09-21-2007

Leroy,

I'm sorry to hear that your pain continues. I had hoped by now that it had subsided and that you were finding relief. I'm glad that, at least, you are finding solace in your surroundings. The story of the injured deer is beautiful.

When I have "pity party" days, I often think of those who are suffering more or who have survived worse. Their strength gives me hope. I had the opportunity to meet Lt. Col Brian Birdwell a few days ago. He is a survivor of the 9-11 attack on the Pentagon and was burned over 60% of his body. His survival gives me goosebumps and I can't imagine living through the agony of his injuries. During the course of the conversation he talked about suffering. He said that in the early and very painful days of his recovery that his pastor told him that "God never wastes our pain." He said he quickly dismissed the comment and until much later did not understand these words as he was just trying to make it through each day. Some time later a young man was badly burned and he was asked to visit and encourage him. He said that his pastor's words suddenly came back and he finally understood. His painful experience began to make a difference in the lives of others.

I believe you do that every day, Leroy. You make a differencce and teach us all that if you can do it, we can, too!!! Thank you!!

Sent by Suzanne Lindley | 9:48 AM ET | 09-21-2007

Good Morning Leroy and Everyone Else,

Again, another topic I know all too well. I live in constant pain, both from a bad back, and from the damage done to my legs from the chemotherapy. At this point it has become almost a background noise, and just like your friend the buck, I just deal with it.

What is weird for me is when I have additional pain. New pain that is outside the "norm." This really just sets me off, totally upsetting my routine. You know, normal things, hitting your thumb, stepping on a stone, anything that would just be a mild inconvenience for someone else is really bad. It causes me to lose control of the rest of the pain, and then I am miserable. It has made doing things around the house a major effort, and something that requires planning. I have to plan to be out of action for a time afterward. The effort to deal with this pain is very draining. It is what has left me suffering from pneumonia so often. I just spend so much energy dealing with the pain that I leave myself open to pneumonia. But as you said, what else is there to do?

Of course percoset could help. But then we would be much more dull.

Sent by Brit | 9:59 AM ET | 09-21-2007

Like all of us, I don't want you be in constant pain, Leroy. Hopefully it won't increase and you can find something that helps to relieve it.

By the way, I do not agree with Joe A. that by accepting your pain you are like the deer limping to your doom. I see that deer as not giving up and continuing on with courage. If he were giving up he would just lay down and die. Good for the deer, and good for you. Your strength gives us all the the hope to keep fighting and moving on.

Yesterday after my PET/CT scan the doctor called me to say he is more confused than before. The PET scan results on my right hip seem to contradict the MRI results from Monday. The bone marrow pictures do not show as much active tissue as the MRI showed. That could be good news. He is going to present my case to the tumor and lung boards and see what those docs think. We are supposed to have a plan of action by Tuesday afternoon.

The results did confirm that there is something new growing on the left hip. There was also something slight in my chest. That could be related to my cough that is getting increasing worse. We will try antibiotics for that. Hopefully it is not a recurrance of the original cancer in my lung.

Life is nothing if not interesting. I feel good to be alive and able to share this time of life with all of you. The connection is so reassuring. Thank you all and have a peaceful, joyful weekend.

Sent by Laurel M. Jones | 10:15 AM ET | 09-21-2007

To Suzanne L.: Your story about Brian Birdwell is just beautiful. I have found that to be true throughout the most difficult and painful times of my life. It really inspired my morning. Thank you.

Sent by Laurel M. Jones | 10:23 AM ET | 09-21-2007

Dear Leroy,

I stopped my chemo one round short in my last cycle this past Wednesday. Why? 1) I lost confidence that it was working. And 2) it was completely debilitating me. Reason #2 was the primary driver behind my decision. It was putting me in pain, a foul mood, and keeping me from those things which I have decided are important... helping my daughter with her homework, being with friends, and being active. Skipping this last round allowed me to spend 2 hours with my daughter last night on her math homework and on Saturday some of our closest friends are coming over for Pizza night. I don't want to miss out on the time I have left. I even hope to begin some light exercise today or tomorrow.

I had what my chemo doctor refers to as "salvage" surgery 14 months ago. I still have daily pain from that surgery that can spike to an 8 or 9 on the pain scale. Fortunately, it only lasts from 30 seconds to a few minutes a few times per day. The rest of the time I'm relatively pain free. But, because of that pain, I'm on a constant low dose of Hydrocodone and to help me sleep, I use both the Hydrocodone and Xanax. I can't seem to sleep without them. Sleeping pills and the heavier narcotics gave me a headache.

I've heard from you and many of those in this community that at least we're alive. Just like that buck with the bad leg. There is a quality of life issue here. At some point, some of us will find the quality of our life is so poor that the alternative, death, there I said it, will be better. I'm relatively strong, vibrant, young, and have a desire to move forward on this planet. But, pain and disabilities can wear that away. That's really why I didn't go forward with the chemo this past Wednesday. I was afraid that would be the straw that broke this camel's back and I would welcome the alternative to life.

I have a PET scan that is supposed to be on Monday although it is not yet scheduled. Please wish me luck. Ideally, it will not show any evidence of disease. I'm hoping for that, but am not counting on it.

I hope that you can find some relief soon; the human body can take only so much pain and stress.

Regards,
Ed Steger
www.hncancer.blogspot.com

Sent by Ed Steger | 10:40 AM ET | 09-21-2007

Leroy,

I can't think of anything I'd like less than unrelenting pain.I am so sorry that you have to have this, too. I'm no druggie, but I might try weed.

Sent by Diana Kitch | 10:43 AM ET | 09-21-2007

Leroy,
Sorry to hear about the constant pain. I was lucky and was only in pain for a couple of days at a time during chemo. Funny how we learn to bargin and live with symptoms. I was just talking to a parent of a child on the intensive care unit where I work. He knew just what I was talking about bargining with symptoms and learning patience. Whether a patient or a parent, it's a heck of a lesson to learn. I keep saying I wish I could have just read a book.

Sent by Lisa | 11:29 AM ET | 09-21-2007

Dear Leroy,

This is my second attempt at posting. I don't think the first post went trough. I don't have any positive or negative news on my end. We are in
"Limbo" right now.............my husband is still having chemo and still needs to have his CT Scan. The only positive news is that he is not in any pain.

I just wanted to say how sorry I was to hear about your pain. It seems as if its a chronic condition. You have survived harder times before. Treat yourself with some tender loving care and you will get through this rough patch too.

As always, prayers to you and Laurie.

Sent by sasha | 12:49 PM ET | 09-21-2007

Sorry that you are in pain. Luckily, I've only had short bouts of pain. But sometimes it is terribly painful! Luckily, it was managed OK and went away after a while.

There isn't much worse than pain, obviously.

Hoping things get at least a bit better for you.

Sent by Scott S. | 12:57 PM ET | 09-21-2007

I'm sitting here reading your message and those of others with tears in my eyes. I think the most terrified I ever was during my treatment was when I experienced debilatating pain from the chemo drug, taxol. After only a few sleepless nights, I am ashamed to admit it now, I wanted to die. Pain had me in its grip and I felt powerless except to make the final decision to end it. Thankfully, I didn't; I couldn't leave my family. Today I live in fear of cancer coming back and bringing along its evil friend.
God bless you, Leroy.

Sent by Jessie | 1:21 PM ET | 09-21-2007

hang in there : )

Sent by c | 1:24 PM ET | 09-21-2007

Leroy> ...now we also have deer in common! Our deer graze our hosta in what we call our Wisconsin Gyarden (north side of the woods). Seeing the deer and other critters is one of the upsides of being somewhat homebound.

Ed> I couldn't agree more. We should be the final say in our courses of treatment. Second and third opinions seem to be more important daily. Thanks for keeping us updated on your blog. Your family is lucky to have you!

To others who posted of crowded patient rooms: Our loved ones need to be accommodated with reagard to _all_ aspects of our treatments. Aside from family, we've requested to have computers, guitars, iPods, etc. in the waiting rooms and treatment rooms. If our patient-rooms get any more crowded, we're asking to be allowed to wait in the main waiting room. We're certainly well beyond any illusions of confidentiality in our clinics *shrugs*

I'm learning that many medical folks don't like that we ask questions, don't like that we're assertive, don't like that we want to know more than they want to tell us, don't like that we have internet resources through which to exchange information...

I'm learning that I'm the only one who's keeping track of all of this. Juggling the staff of four departments isn't the easiest job I've had, but, to be honest, it's far from the toughest...

May all of
Our negativities
Drain away into
The Changing
of this Season.

Here's wishing
Us All
An Awesome
Autumnal Equinox!!!

I agree with Joe: we all need to celebrate ourselves!

*raises a tall glass of iced water, knowing that she's not going to be able to tolerate the cold much longer*

-dp

Sent by dp | 1:25 PM ET | 09-21-2007

Leroy,

Sorry about the pain. I hoe it somehow goes away along with the disturbed sleep.

I've been reading your blog from the start, but am not a member of cancer world. Last night I was at a function and the speaker mentioned that her husband had terminal cancer that was diagnosed last fall. When she came up to talk to us I told her I was sorry about her husband and we talked about that for a bit.

I don't know if I would have said anything before the blog. I think it
was the right thing to do - I hope it was. I certainly feel bad for them both and feel better for having said something. Thanks for the blog.

Sent by Geoff | 1:46 PM ET | 09-21-2007

Dear Mr. Sievers,

I haven't posted in quite awhile, preferring to read the wisdom and comments of others, but this morning's topic is much too near to my experience to ignore. First, may I say how sorry I am to hear of your pain. I would do anything to alleviate it if I could. Secondly, I am living with the same debilitating pain but mine is caused by osteonecrosis of the jaw, a side effect of Zometa, one of the drugs used during chemotherapy. When it developed, my oncologist immediately stopped the chemo but by then the damage was done. I understand that this condition is irreversible and only about 10% of patients using Zometa get this. Truly a double edged sword! I just wish someone had warned me of the possible side effects but there is no use crying over spilled milk, as my grandmother used to say. The pain is relentless and never ending, so now I am on heavy duty narcotics (Oxycodone and Vicodin). I don't know which is worse; those or chemotherapy.

I don't wish to dwell on the subject but I do wish to let you know that all of us out here are sympathetic to your pain and wish you all the best.

From an aging and limping doe who will also live with it and soldier on.

Brenda Y. Lynch, Everett, WA

Sent by Brenda Y. Lynch | 1:47 PM ET | 09-21-2007

Leroy, Like all the others, I'm so sorry to hear that you are in pain. You are obviously touched by the pain of others you meet and probably want to help them deal with theirs. Can you think of anything you need or want that would help you deal with yours?

Sent by Nichole FL | 1:52 PM ET | 09-21-2007

Hi Leroy,

Pain sucks, whether it is mental, physical, or both. Right now, I am sorry that you are in so much pain. I wish I had some way of saying hold on, it will get better, but it might not. Sorry for the gloom and doom here, but I am finding unremitting, or only occasionally remitting pain to be a real drag, and I'm wondering how much longer to continue even living with it.

The way I feel just isn't okay anymore. I've taken the drugs, do acupuncture, meditate, dissociate, distract, but, truly, at the moment, I'm down and venting about it. Because the pain and the stress have gone on so long that I'm beyond tired, and even beyond desperate.

Leroy, you do what you can. I think the buck is brave to continue and adapt however he can, for as long as he can. Nature probably pushes that in most creatures. Keep living, as long as you are able. Well, I really hope you find something that helps. A medication called neurontin sometimes helps with nerve pain, even very severe nerve pain. As does a medication called cymbalta. (and nope, i'm not a drug rep. -- just a very experienced "patient.")

good luck kiddo.

--Kim

Sent by Kim Blankenship | 2:07 PM ET | 09-21-2007

Pain sucks. Cancer sucks.

Deer in the yard, even with a limp, very good.

Leroy typing and sharing also very good.

You are truly doing your best and that is all we can ask.

Biggest hugs,

Lori

Sent by Lori Levin | 2:18 PM ET | 09-21-2007

Hi Leroy,
As I listened to your story of the deer, it made me think of my Dalmatian. He has numerous tumors on him as well as dealing with getting old (almost 14). I'm sure he is in a lot of pain at times but he endures for the moment and soon he has his mind on his treats, whats going on outside and taking a nap. I learn a lesson each time I watch him deal with his problems. He never dwells on his illness for very long until he is thinking about something that he likes. If only we could be more like him. I'm sorry to hear about your pain. I hope your weekend goes a lot better. I pray that all of us has a extra blessing and good weekend. Love and Hugs

Sent by Teresa in WV | 2:25 PM ET | 09-21-2007

Hi Leroy:
I join your growing throng of wellwishers in saying I'm so sorry that you are in pain. As a journalist, I once interviewed a cancer pain specialist who told me that more than 90 per cent of pain can be controlled these days with medication, at least enough to keep the patient comfortable. If he's right, there must be SOMETHING they can do for you and the others who shared similar stories on this blog!

I hope I don't sound insensitive but is there some way to help the buck? Would a veterinarian or natural resources officer be of any help to the animal? I know the sightings are random but maybe they could help you help the buck, thereby creating some good karma for you. Just a thought...

Sent by Nancy Boomer | 2:27 PM ET | 09-21-2007

Dear Leroy and All,

I'm sorry to hear that you are in pain, Leroy. I really hate that. Once again, you, and the other people who write here really put things in perspective. I've had a migraine for four days, only today am I feeling better. It impacted my life this week, not only that I was hurting, but that I didn't feel like doing anything. To hear how much you are hurting, and how much constant pain others are in makes me feel like a real sissy. Keep after those doctors. There has GOT to be something that will help you. Try it all. Yes, even medicinal pot if you need it. Whatever it takes.

I continue to pray for everyone here. Have the best weekend you can have, everybody. My love to you all.

Connie E.

Sent by Connie E. | 2:48 PM ET | 09-21-2007

Chronic pain is certainly a global issue for anyone who has it. The sleep deprivation, loss of appetite and depression that it can lead to can really demoralize. Getting help is important for getting ones' life back. Some excellent suggestions have already been made. Accupuncture may be helpful even if narcotics aren't. Additionally, there are anesthetic patches to be applied to the skin that may help. I hope that your docs find the answer or answers that work for you, Leroy. Don't give up on a solution. A anesthesiologist/pain management doctor may have effective treatments to offer. Consider yourself (gently) hugged.

Sent by Nancy K. Clark | 3:04 PM ET | 09-21-2007

Leroy, so nice to hear that you are tolerating the poor deer and their plight also. Construction and overdevelopment have chased them from their natural habitat. Oh the harm we have done to this planet! So happy to know that with all your pain and troubles, you can still speak lovingly of them even while they destroy your shrubs.
YEs relentless pain can drive you crazy! My husband has suffered with nagging pain for over 50 some yrs now since he had spinal fusion when we were first married. Six screws hold his lower spine rigid while the rest of his spine has the usual ravages of old age. His pain has been constant all these years, yet he has learned to live with it, has been a very active man and refuses to take pain killers. He realizes what any further surgery can do and he could not stand for any increased agony at 86.
Leroy, you are still young and hopefully will come through all your ordeals. You have garnered much love and support from us all. You are an inspiration!

Sent by J C R | 4:07 PM ET | 09-21-2007

I can relate to the ???My Pain???as I???m going through it my self.

The harder pain to handle with is the pain I see in my wife* lover*caregiver eyes. As she sees the pain I???m in. My only comfort I can give is to be courageous and strong through all this. Knowing the strength we give each other. You know the rest???.

Sent by Kris Worrall | 5:15 PM ET | 09-21-2007

The PET/CT results on my husband show something in the lower spine, but the oncologist doesn't think it is anything. He wants to talk it over with the radiologist that read the scan & see exactly what he thinks. We have no choice but wait to hear what the next step is. Will it be a MRI to see up close & personal around the lower spine or 3 months until the next scheduled scan to see if anything has changed. How do people do it, how do they live while waiting to hear if they are going to die. I hope there is some meaning to all this suffering. I hope there is some greater good that will come from all of this. I read the blog everyday & my heart breaks, but yet there is a strength too that I take away from it. Maybe that is it, maybe it is the way we help each other that is the greater good. I certainly hope so. Thanks to everyone of you who has helped me by just sharing your thoughts. I only hope I can return the favor. Leroy you are the best for bringing us all together. I'm just sorry you had to.

Sent by Kathy | 5:32 PM ET | 09-21-2007

I'm so sorry you are having pain that the medicines can't touch. That really sucks (beyond the other parts of cancer sucking that is ;-).

Though I am so far cancer free, I have mouth pain (similar to the feeling you just burned your mouth badly) just about every day as a result of radiation to my mouth. I thought it would go away, as it does for most people, but I am more than 2 years out of treatment and my ENT has said this may last forever. It isn't constant but it does occur daily, in the morning when I wake up form drymouth overnight and in the evening after talking and trying to eat all day (and I won't even go into the huge long list of what i can't eat because their ingredients cause me worse pain). It has just become something I live with now. But I also know it is nothing compared to the pain some cancer patients suffer, and also what I may have to suffer someday (grim thought).

I hope your pain stays at least tolerable enough that you can continue to hobble around like that deer. More than that, I hope maybe they can find what's causing it and help you find a way to get some relief.

Sent by N.R. | 5:34 PM ET | 09-21-2007

Ed,

GOOD LUCK!!!!

Sent by Diana Kitch | 6:22 PM ET | 09-21-2007

Leroy,

That breaks my heart. I know you're doing your best, but please be vocal with your doctors about this. As loud as you possibly can.

Teri

Sent by Teri Thomas | 7:23 PM ET | 09-21-2007

Hello Leroy,

I read you daily but haven't had the gumption to blog until now.

I just wanted to let you know how brave you are. I know that you do not think you are brave every day, every breath, and every step of the way, but you are.

In July I lost my husband to this relentless disease and I still stand in awe of his grace and dignity despite the fear of the unknown and the pain. And he did not think he was brave either - but he was.

You live with courage every day of your journey, even when you have your down days. And you teach all of the care givers how to belly up to the bar and tuff things out because you yourself do it every day.

If there is any gift to be had from cancer, then it is the gift of your spirit and the strength it gives to others.

I wish for you pain free days and nights and hope that the doctors can crack the code to relieve your pain.

Sent by Trish McGowan | 8:04 PM ET | 09-21-2007

Leroy,
I'm sorry you're feeling pain. I guess there a lot of things in this world we just have to accept since there are no other options. But, I hope you feel better anyways.:)

Sent by Sandra Soler | 10:04 PM ET | 09-21-2007

Usually I read through all the comments, after I read your blog in the morning. Today, however, I've devoted to finishing writing the (not religious) memorial service for my mother, who died at 96. Maybe the hardest thing I've ever done. So after 8 p.m. I read about your pain.
I'm so sorry. I HATE pain. I've had some terrible moments, but haven't had to endure chronic pain. Post cancer (so far) my only complaints have to do with sporadic and wandering arthritis, and when I'm in much stress, pain from chomping on the inside of my mouth.
I feel awe and respect as well as sympathy for anyone who endures chronic pain. The docs tell us there are meds to control pain, and there SHOULD be.
So I hold you in the light, salute your courage, and hope the pain is taken away from you.

Sent by Joan | 11:31 PM ET | 09-21-2007

I saw an article in the New York Times recently that I'm still thinking about. (Donald G. McNeil, Jr., ???Drugs Banned, Many of World???s Poor Suffer in Pain,??? New York Times, September 10, 2007.) It's about a woman from Sierra Leone named Zainabu Sesay, who's got advanced breast cancer. She's had little in the way of treament, is dying from her disease, and is in constant, agonizing pain. She gets no morphine-based pain killers because those drugs are simply not available in her country. (Yes, you heard me right. Morphine. Not available. It's banned by the government. But even if it were available, the poor couldn't afford it.)

Sierra Leone is not a good place to be a cancer patient. There???s not a single CT scanner in the entire country. Only one private hospital offers chemotherapy treatments. Sharecroppers like Zainabu and her husband couldn???t dream of affording even one chemo treatment (as though one treatment could make a difference, anyway).

Sierra Leone is not alone. Here are some telling statistics from the article: ???Six countries ??? the United States, Canada, France, Germany, Britain and Australia ??? consume 79 percent of the world???s morphine, according to a 2005 estimate. The poor and middle-income countries where 80 percent of the world???s people live consumed only about 6 percent.???

Do the math: 80 percent of the world???s people get just 6 percent of the world???s narcotics. That means a whole lot of cancer patients are living with levels of pain unimaginable to anyone in our culture.

I think back to my minor surgeries, and how worried I felt about pain of a few seconds??? duration, that might break through the ???twilight sedation??? I had been given. Compare that to Zainabu Sesay???s unceasing agony ??? well, there???s no comparison. None whatsoever.

It's humbling to think of these things. Thankfully, I'm not experiencing daily pain, as you are, Leroy. I'm grateful that, the next time I have to have a painful procedure or surgery, there are drugs that can bring a modicum of comfort.

There's just too much pain in our world. May you find the grace to endure yours, without letting it compromise who you are.

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

Sent by Carl Wilton | 12:15 AM ET | 09-22-2007

I am sorry to hear of your pain, and equally its mysterious origin. Such a bugger that, and can give rise to misunderstanding and suspicion.

This is a constant subject around our house, between my husband and me, and also between him and his oncologist. About 3 years ago, early in this second 'bout with cancer, my husband was put on Fentanyl patches (12.5) which seemed to help. Long journey up and down the dosage latter, and now he's stuck at 12.5. He also takes percoset, daily. It's troubling because he complains of pain most days, but the doctor seems convinced that much of the pain is really now addiction-related. Nonetheless, he writes the prescriptions because he has no better solution, all in. Who can tell?

I get stuck in the middle, wanting my husband to be as mobile, alert and painfree as possible, but not zoned out. Given that he's a guy who never met a pain medicine he didn't enjoy, and given his prognosis, it's hard to cheerlead for exercise, massage and a positive attitude when I have no way of knowing how bad he feels. Those little facial expression charts just take you so far, and don't get inside the patient's head. So, he carries on, with his patches and his percoset. Oh, and this week he will finally see/try a psychotherapist to see what role depression may be playing in all of this.

I must admit at times to being angry about the Percoset and its effect, and equally angry that the pain can't be put in a box, diagnosed and dealt with more definitely. By now you'd think I'd be over such simplifications.

Sent by Teri | 5:16 AM ET | 09-22-2007

51 comments, 47 comments, 62 comments. But number of comments on your posting about pain? 14 Was it because it was a Friday? Or just because it's hard to know what to say? It strikes home with so many - but what can we do from afar? We can't call for the nurse to come, we can't call the doctor for advice, we can't get another pill for you and we certainly can't say "buck up, it will be fine!"

Just know that there will be an extra prayer (above the ones already coming) for you every night in my heart. And for Laurie as well. Does it help? I don't know, but it's the best I can do from Minnesota. Take care, Leroy.

Wendy

Sent by wendy | 9:14 AM ET | 09-22-2007

Dear Leroy, I'm sorry you are in pain. I have had pain too and still have some. It was hard for me to accept taking pain medication but I found it helped immensely and I hope there is medication that can help your pain. Do not be afraid of becoming addicted - that is not important now. What is important is for you to have quality of life and relief of pain will aid that. I found that I was very grumpy and unpleasant when in pain. I was resistant at first to taking pain medication because of working in substance abuse for a large part of my career. Forgive me for preaching but you are important and I wanted to try to help. Praying you have some relief.

Sent by Vicki (FL) | 9:21 AM ET | 09-22-2007

Hi, Leroy.
I'm with Diana...it might be time to try a little weed. Medical scrip or other source, man, it's worth a shot.

One of my hobbies for the last 25+ years has been dog training--obedience, conformation, agility, and now rally. And because I met a breeder who believes in the healing power that dogs can give to people, I have a new dog--a wonderful sweet promising retired showgirl who needs a job. I love a challenge, so I started working with her last November, and started her in agility in January.

Agility training (for the human) is like windsprinting or doing 100 yard dashes repeatedly for an hour. And when you're not moving rapidly from one spot to another, you're bending and twisting and moving the equipment and changing directions on a dime. In January, in central NY, in a pole barn with a frozen dirt floor.

I didn't think it was too serious when I hurt after M.'s agility classes. I blamed it on the cold. I blamed it on being out of shape. Then the pain got worse. I've been on some variation of pain meds since May, because the pain is constant and then when it flares, it is, as you pointed out, mind-numbing. I'm also not sleeping too well. And the heavier stuff (my oncologist prescribed Lyrica) mainly relieves the pain by putting me into immediate zombie sleep state, so that's not a full-time solution.

I've had six CT scans, and last Tuesday an MRI. The good news is it's not cancer mets...I guess that's the up-side.

The bad news is that it's spondylolisthesis (a degeneration between L4 and L5) and a significant disc herniation between L5 and S1. It really threw me for a loop when I heard last night...like having a stroke, and then stage IV cancer weren't enough?

The pain is bad, but the PT is helping, and I will figure out how to cope better. After all, I have a new dog to train and she needs me. But Leroy, there are moments when the pain flares that I'm beginning to think a little medical weed might not be a bad idea...

I keep hearing Gilda Radner saying "It's always SOMEthing!"
Fingers crossed that you find some pain resolution.

Sent by Pat | 10:13 AM ET | 09-22-2007

Leroy,

I am so sorry that you are having to deal with the frightening monster of pain. Perhaps every avenue of relief has been tried by your doctors, but, a clinic specializing in chronic pain treatment or a neurologist who is up on the latest nerve pain drug could be what is needed.From what I understand, nerve pain is different and requires something different. I am sure that you may not have the energy to go on the search required. Perhaps a support person in your life could set up some appointments for you? Also, I have heard of marijuana -not marinol-providing great pain relief for some.
The other day, at my oncologist appointment, the nurse asked me if I had any pain today. "No" has been my answer each time. How very fortunate I have been thus far. This could change at any point, but what a gift. I do hope you will have relief soon.

Sent by NancyGM | 10:19 AM ET | 09-22-2007

Sorry to hear about the pain, Leroy. It is a focus I wished I did't have to deal with pain on what seens to be on a second by second regime. Thank God for my borrowed chair!!!

Sent by Kay | 7:39 PM ET | 09-22-2007

I am always just amazed at the horrific side effects people experience from all these drugs that are supposed to be helping. There needs to be full disclosure to patients on all of these drugs they are recommending we take.

I've had radiation to both of my shoulders and yes I would do it again because it stopped the pain of the cancer that had metas to the bones there and it stopped the cancer in that particular area - but it left my surrounding bone and surrounding muscles very weak - no one bothered telling me this until I complained about it for months after the fact - it didn't help the actual physical weakness but it did help me to know it wasn't all in my head!

Brenda, I've also heard that Fosomax (used to treat osteoporosis) also can cause osteonecrosis - just like your Zometa did to you. We're a bunch of guinea pigs aren't we???

Sent by Vicky (NY) | 8:58 PM ET | 09-22-2007

Leroy,

Please remember through the pain and sleepless nights, that you are loved by this great support group called your readers.

By continuing to share your life with your readers, you are bringing together a group that probably would never have met. You give hope to those just starting out on the path that life will continue and that prognosis aren't always right.

This blog is truly award-winning. It gives hope, a voice to those who can't/won't speak, and a forum for long-distance friends to me.

And to Lori - thank you for the support and care that you give Leroy. We appreciate the hard work and tough times that you are going through as well.

You are both in our thoughts and prayers.

Sent by Marie | 9:30 PM ET | 09-22-2007

I am so sorry about your pain. There have been days, when all that kept me going was my dog, who needs me to take care of her and your words. On a couple of weekends, I read old blogs to keep my spirts up.

I wish that I had words that would help your pain.

All I can offer is that I know there are many more who have been able to cope thanks to your honesty and willingness to share.

Thank you for the help you've given me to face cancer and its attendant pain.

Sent by Earlene | 1:51 AM ET | 09-23-2007

Leroy,
My father's cancer started the same way. He has a hole in his T12 vertebra due to radiation and tumor but right now, his cancer is at bay. He is in a lot of pain and trying to decide whether or not to have major surgery on it (where they would cut from the front and collapse the lung) or push trying to receive the vertebroplasty. It is such a tough decision. Did you regret having the vertebroplasty? Thank you. Thoughts are with you.

Sent by Susan Sandlin | 4:15 PM ET | 09-23-2007

Pain, Weakness, General Sickness caused by the Chemo.... how do we handle it... I remember that YOU, Leroy told me some time ago that this is the HARDEST THING I would do in my life... the equivalent of climbing a mountain.... So I just think of the PAIN, FATIGUE, and FEAR that a Mountain Climber faces during the worst part of his climb and KNOW that I can put on a brave face and LIVE THROUGH my challanges.
What really brings a tear to my eye is on my worst days watching my wife spend hours taking care of my every need. The FEELING of being an INVALID hurts me more than the physical pains.....
Love Ya Leroy...

Sent by John Zizelmann | 12:32 AM ET | 09-24-2007