I'd forgotten how fortunate I am to have self-administered oral chemo until I helped a neighbor through her IV treatments this past spring. I'd forgotten how young I was 20+ years ago when I was one of those doing the IV chemo. I'd forgotten how crowded those chemo rooms and waiting rooms can be. But what I did remember with a smile was how different it was 20 years ago. My chemo buddy, Al, and I used to be the "ward" cut-ups, sneak off with our "Myrtles" (Al's name for those awful, but "movable", IV machines) and wander through the hospital, knowing we were once again giving a couple of over-worked nurses cause to panic that two of their patients had again "escaped". Al loved to sing; he taught me some rather bawdy Canadian whaling songs that we used to sing just loudly enough to at least make some eyes roll. Yes, we had hope at that time, but I think there was less hope in some respects--enough so that we didn't care if we broke the rules as long as we were amusing ourselves and not hurting anyone but possibly ourselves. Twenty years later, that chemo ward seemed so much more serious which made it seem so much more resigned, less hopeful. I'm glad you found someone with a laugh that was loud and strong. Laughter is my drug of choice--always has been, always will be. If we can laugh at something, it seems less fearful, less ominous and lends a modicum of hope to that "something." After all, how bad can something be if we can laugh at it/during it?

Sent by Lani | 7:59 AM ET | 09-19-2007

The other day, enraged, I kept insisting to my husband that cancer is such a RIDICULOUSLY LARGE epidemic and I don't hear enough about it. Even before I was diagnosed a couple of years ago cancer has invaded my life in so many places. My first experience was almost 20 years ago already when I was very small. My grandfather died from pancreatic cancer. I know that here we are 20 years later and the prognosis for those with pancreatic cancer is still not good at all. The point is that IT IS NOT GETTING BETTER. Even though I realize there is attention given to cancer in the US, there is NOT ENOUGH. I hear a lot about breast and prostate cancer lately, but I don't hear enough about all of the other 200 types of cancer out there. Something needs to be done. Being a person who is not political at all it is strange for me to want to invade Congress and whoever else and make sure something is done. TOO MANY people are dying. Too many people, like me, have such a dismal prognosis, and I believe in this country with all of its possibilities and research should NOT allow this to happen. I am not old enough to die yet, and as some say I live in the "greatest country" in the world. If that were true I wouldn't be dying from cancer at 26. There would be more treatments, more trials, more effort to save not only my life but the lives of everyone, young and old, dealing with this horrific disease.

Sent by Laurie | 8:02 AM ET | 09-19-2007

'Morning Leroy,

Sorry about the reports. Some days at the hospital are all day. I am not looking forward to my day when my sister has repeat biopsies next month.

I was leaving for work today, and she was leaving for an eye appointment at one of the clinics. Why do I mention this. Most of the clinics do not start until 8:30 or 9:00, this was 6:15 in the morning. Why so early, disabled parking is a premium. Get there early or you many not get a place.

Rest today, I am sure you are still tired from your all day affair yesterday.

Sent by Sue Chap | 8:04 AM ET | 09-19-2007

I'm sorry to hear about your results and my heart goes out to all that have to be there. It's sad that so many have cancer but at least there is some help. I believe if the health care system was improved less people would be dying. So many can't afford the care necessary and that's my thought for the day. Hope today is a better day for you Leroy and you can find something special about it. Yesterday I was feeling down so did what women do and bought a pair of shoes at Goodwill for $5.00 which gave me a little lift:)

Sent by Vicki (FL) | 8:46 AM ET | 09-19-2007

In the cancer world, what passes for "good news" is relative to comparing it to the worst news!! Glad you received "good news". Hope that your docs have a plan- watching and waiting is a plan but one that is often hard to accept when "some growth" has been noted. Here's hoping that something more substantive is an option for you.

Until I sat in the infusion room with some 30 others, I had no idea as to the "cancer epidemic". I have wondered....is it more prevalent today than say 30-40 years ago or is it that the doctors are more adept at diagnosing it? Maybe the answer is "yes"! No matter, the evidence is there for all to see. The oncology offices and infusion rooms are full and often run 3-4 shifts per day to accommodate everyone in need.

While some progress has been made in some treating some cancers, the numbers are still miniscule when compared with the number of new patients being diagnosed. We can only do the best we can, seek treatments for our specific cancers to hopefully stumble upon one treatment that will work for us and hope that the "guys in the garage" will solve the "riddle wrapped in an enigma" that is cancer.

Blessings and prayers to you and Laurie. Take the "good news" as a small victory!!

Sent by Al Cato | 9:00 AM ET | 09-19-2007

Crowds in chemo rooms, handicap parking lots, phlebotomy chairs, XRay and beyond. I can't help but wonder, would there be a place for someone like me, a 10 month cancer survivor/"retired" ENT doc/mom of 2 teens/40-something woman, to help/volunteer? I want to help somehow, but don't know how or by doing what. I don't have a keen wit (naming my IV pole and singing in the halls of the hospital), but I sure can laugh and participate with those who do! My shoulder is drip-dry for those who just need to let it out. Do any of your readers have any ideas?
Laurie, what kind of cancer do you have? If it is HPV mediated, (like mine), there is perhaps something you (and I?) can do to decrease the numbers of people entering Cancer World: prevention of infection. I'm not sure how to go about it, but would love to network with like-minded people and researchers to get the word out: this is the only cancer you can PREVENT with immunization! Awesome! If you have some other kind of cancer, I'm sure there is someone you could partner with in order to help bring more attention to cancer. Susan Koman had to start somewhere!
'My' hospital has about 50 designated parking spots for those visiting the cancer center AND free valet parking. Don't know how long these incredibly wonderful and helpful services will last, as the hospital was just taken over this summer by a big conglomerate. But they are immensely helpful here - perhaps they can be instituted at other centers?
Thank you all for your emails. I gain strength from each of you. May everyone in Cancer World find their source of peace.

Sent by Dr. Lynn | 9:18 AM ET | 09-19-2007

Good Morning,

I wish your results had come out better Leroy, but your attitude about it sounds pretty good today. I'm glad there was only small growth in your tumors. That's better than it could have been.

I spoke to my doctor yesterday and tomorrow I'm getting a PET/CT to see if the cancer is in any new places other than my hips. Then probably on Monday we will come up with some sort of plan.

It has been a real blow this week to realize that I'm out of the "let's go for a cure" phase now and into the "let's extend your life as long as we can" phase. I think I'm still in shock about it.

Last night I sent out a medical update email to my family and friends. I think it helped me to make it more real in my mind.

Hopefully once I get through the shock and sadness of this new news I will get my fighting spirit back. I keep thinking about all of you out there who after being told you had only months to live, have made it for years. That is a picture I need to hold on to. I need to make it a personal goal. That, along with laughter and grace.

Sent by Laurel M. Jones | 9:42 AM ET | 09-19-2007

Well you made me teary eyed again... thank you.

Sent by Brit | 9:52 AM ET | 09-19-2007

Being the oldest of three kids - I have the added stress of worrying about my Dad (stage IV stomach cancer) and my mother (the caregiver). There are no further treatment options for my father and we have started thinking about how my mother will be taken care of after the fact. Yesterday I called to get some information about COBRA, gave a short explanation about the situation and the woman on the phone didn't know what hospice was. After that call I thought to myself 'How can someone not know what Hospice is?' and then I realized how much you learn from the cancer world - I'm sorry I actually do know a lot of these terms and felt a little jealous about how lucky that woman was that she didn't even know - maybe sometimes ignorance is bliss.

Sent by Heather C | 9:55 AM ET | 09-19-2007

Dear Leroy, I learned about you and your Blog on the Discovery Channel program... a DVD of that program should be available to every Cancer Center as I have gained so much from your experience and outlook. I am in a clinical trial at Duke U. Hospital and have long passed my "expiration date". Your courage in your words inspire me everyday -- I have been touched and comforted and laughed alot.
I pass it along whenever I can. Tomorrow is my all day of scans, doctors and new news. I'll think of you.

Sent by Ann Erdenberger | 10:07 AM ET | 09-19-2007

Hello Again...I do not see myself as a Pollyanna, but, to my mind, the early detection of cancer and the new methods of treatment are what fills the waiting rooms.
Although I am not a medical person, I too would love to be able to help others who are battling cancer...sending checks to the ACS just isn't enough. As a lung cancer survivor, I think I have more to offer.

Any suggestions? I can knit chemo caps, but would like more personal contact.

Peggy

Sent by Peggy Miles | 10:17 AM ET | 09-19-2007

I, too, spent yesterday at the cancer center. I am still trying to come to terms with 'we need you to get a brain MRI with and without contrast' as just being cautious. I think I stopped breathing for a while. However, my oncologist did make me laugh out loud when he said he was so PLEASED that I have having massive hot flashes...it meant the AI was working correctly. He at least looked sheepish when he said it.

Sent by glenda | 10:23 AM ET | 09-19-2007

Yes, it does seem wrong. Obscene! Maybe we need to make more noise? When people are going through treatment, they are usually too sick or scared to do that, but maybe survivors need to band together with someone like Dr. Lynn and try to spread the word about the seeming explosion of cancer patients.I don't think the outside world has a clue this is happening!

Your comment about the nurse having to stick you three times before getting the IV in made me wince but also reminded me of a recent similar experience that provoked wry laughter:
When I had an MRI a couple of months ago, the technician gave me three very painful sticks, then sighed heavily in frustration (as I silently gritted my teeth) and then he asked, "Have your veins ever burst?"After a moment of stunned, disbelieving silence, I responded, "Not so far."

Sent by Doris | 10:32 AM ET | 09-19-2007

Hi Leroy, I, too, was at John Hopkins yesterday and recognized both you and Laurie as you were sitting outside the chemo waiting room. You both looked tan and healthy and if I hadn't recognized you I would have easily thought that you were a patient's family member just like me. I wanted to say hello and thank you for your daily blog site but you were busy with other people who had stopped to say hello.

I was there with my brother who was diagnosed with leiomyosarcoma on his 67th birthday March 13, 2007. He had gone in for the results of his recent blood work and he asked his doctor to give him a quick once over. When his doctor pressed on his stomach, he felt a lump and immediately sent him for further testing. It was a total shock as he had no symptons and looked great. Like you, he still does. That day, we were all thrown into "cancer world". Shortly after that, I saw your Discovery Channel special and I have been reading your daily blog ever since. It has been a tremendous source of not only information, hope and encouragement but has helped me understand the feelings and emotions that he experiences every day. As the country song goes "Some days you're the windshield. Some days you're the bug."

We are six months into treatment and so far the various chemo treatments have not been effective. It has been suggested that he consider a procedure called "chemoembolization" to cut off the blood supply to the tumors that have spread to his liver. It sounds very encouraging and we are anxious to learn more about it.

Thank you again for your very honest, candid writings. I look forward to reading them each day. Know that what you are doing is much appreciated. I'm keeping you and Laurie in prayer.

Sent by Donna Lemert | 10:34 AM ET | 09-19-2007

Good Morning Leroy and All,

Leroy, I'm so glad you got reasonably good news after that very long day yesterday. I hope you and Laurie can just kick back and relax today. And yes, the cancer treatment center is usually full to overflowing here also. And too many of my friends now have their own personal battles with this Cancer beast, as well.

Laurie, I can understand your frustration in feeling that not enough information is available to the general public about the different forms of cancer. Most of the information is burried in medical journals on the internet and written in technical lauguage that most lay people will not understand. And most of the newer articles are available only for a fee of $30.00 to $90.00 per article. Who can afford that? I have tried for months to get our newspaper or some magazines interested in doing some articles on Uterine Cancer and the early warning signs, no takers. And so in this information age women will continue to die because they lack the information they need to save their lives. I just don't understand this attitude. Apparently it is ok to joke about the reproductive system but it is still taboo to have a serious discussion about reproductive cancers. And the 5 year survival rate for stage 4 Uterine cancer is still a dismal 15 %. No improvement since before 1990!

To Dr. Lynn, Your compassion and expertise would make you an excellent volunteer to help at the oncology clinic. Perhaps if you aked them, they could put you in touch with their volunteer coordinator.

For All of us in Cancer World I wish a strong will and determination to keep up the pressure on the decision makers to properly fund research and public education on all forms of cancer. Working together we will one day slay the beast called Cancer!

God Bless

Eileen Pruyne
Charlotte

Sent by Eileen Pruyne | 10:36 AM ET | 09-19-2007

Leroy,

Somehow, my take is different. My mom died in 1966, 3 months after her dx of colon cancer. She never made it our of the hospital bed, much less to a waiting room. We have come far from where we were then medically. And we will continue to make progress.

That being said, I wish the damned stuff weren't still growing in YOUR body. Blessings.

Sent by Diana Kitch | 10:45 AM ET | 09-19-2007

My experience with having chemo seems to differ from many others. The hospital I go to is small and the chemo rooms only seat 3 or 4 people. A new policy has been instituted that says caregivers are not allowed in the chemo rooms, only patients. The nurses are not in favor of this, but... I miss not having my husband in the room with me, I sit for 6-7 hours only with other patients. Sometimes administrators need to talk to the patients to find out how to help. Thanks for letting me vent, I know everyone out there understands.

Sent by Natalie | 10:51 AM ET | 09-19-2007

I am truly amazed at how resigned everyone is about their particular "C" and the crowded conditions in treatment Labs.
Leroy, you don't even sound surprised or dissapointed by your diagnosis yesterday. What a pity .
My sister-in-law goes in on the 2nd for her 6 week scan to get her "good news" and plans for her limited future. She too, accepts what she is told with such resignation, after three years of being treated for a lung tumor. The girls in the Chemo Lab have become her dear friends and make a big fuss over her especially since she only recently lost her husband to cancer. They had all treated him too.
Good for you Lauri! Yes, why don't we write our Congressman? Do you really think that will help? I don't.
Greed has taken over what used to be compassion in our medical profession.
Years ago when I had my first Chemo for Breast Cancer, my Oncologist gave it to me in his office, with a painful look on his face, as though he hated shooting that poison into my veins. Each time I went for another treatment he would spend time talking with me first and asking me questions and would adjust my intravenous accordingly. I truly felt special and I must have been in good hands 'cause here I am almost 25 yrs later and although I have the feeling that IT is somewhere in my old body today, I shall not worry. I'll take what comes.
For most of you, I wish you could know the care and concern we had back before they got so sohpisticated, modern, crowded, and confused. Today you are medicare numbers, not feeling human beings who have a life to live.

Sent by J C R | 10:53 AM ET | 09-19-2007

Dear Leroy:

I am so tired of the fight. Do you ever get that way? I am bone tired. I have been going through this for almost four years. I have days when I just want to give up. I am sick and tired of being sick and tired.

I have Stage IV colorectal ca Mets to the lungs. My lungs hurt and I cough all the time.
My cat scans say my tumors aren't very big less than 1cm. Six in right lung and 4 in my left. There is one around my right main brochus. That seems to be the one that is giving me the trouble.
I went to my oncologist last week and he told me there is no more chemo for m and he has nothing else. I have been on every colorectal chemo drug. Some chemos worked on the cancer, only to come back after about 3 months. Some didn't work at all. But gave me bad side effects like having my bowel paralized for three weeks. Another caused me to fall all the time and break 2 ribs and my tail bone. The last one I took, Camptosar. Caused non stop coughing until I coughed up blood for 24 hours. All of which I ended up in the ER.. and sometimes in the hospital.
My Oncologist said there is no more chemo and noting else. Now, what, just wait and see what happens. I guess that what is I'll do. (Oh by the way I think I am depressed).I have been doing good up til now. I have had hope. I've tried everything.. From a colorectal vaccine, chemo to zango juice.
My faith is faultering and my feelings of no hope are overwhelming. Well sorry this is not as positive as I have been in the past.

CANCER SUCKS!!!!!!!!!!!!!!!!

Ps.I hope tomarrow is better and I can write to tell you I am in better spirits

Thanks for listening,

Beth Morrison

Sent by Beth Morrison | 11:00 AM ET | 09-19-2007

Leroy, dear,

Sorry about the growth in the spinal tumors, but happy that the growth is small. What about the lung tumors? We just must know everything.

Your entry today took me right back to the MRI tube and the chemo room. Yuck. But I've got you beat on nurses/techs trying to get the IV in to give the MRI contrast. Once on me it took them FIVE TIMES.

I'm going tomorrow to get an MRI. It's been six weeks since the doc declared me tumor free, and since I've been off chemo. So we'll see if I'm still tumor free. Unfortunately, I'll have to wait until Monday to hear the word.

I thought when I went off chemo that I'd just feel better immediately, and I didn't. I felt like poop for an entire month. It's only now, in month two, that I'm beginning to get some energy and starting to feel the tiniest bit better. Hopefully it will just continue. It's such a happy and positive sign that it is getting better.

Love to all and thanks to all for the comments. I read every one of them. And a welcome to Ann -- I loved the term "expiration date." I've just about passed mine as well, so hang in there Laurel. There is hope. Just look at Leroy!

Sent by jordis | 11:13 AM ET | 09-19-2007

Dear Leroy,
Isn't amazing how we know what our scans will show even before we get them. It does help not to be suprised. I used to love surprises----not now, even good ones. I am sorry for your wait in all the places you had to go yesterday....i know how hard that is and no matter where you are ,office for chemo, hospital for whatever, all the magazines and books don't make it better. Hopefully your writting helps. i think of ALL of us in the same boat and wish we could be ANYWHERE but where we are in this disease situation. Take care All and Leroy, thanks for all you have done to help us.You and your responders are terrific! xo dee

Sent by dee congress | 11:20 AM ET | 09-19-2007

I've decided that Mondays are not good days for cancer related appointments. I was at Daba-Farber on Monday and it was an experience very much like your's. Standing room only just about everywhere. I got there 90 minutes before my scan time because I like to leave more than enough time for the blood work they must do before they'll scan me. I didn't get it drawn until it was 20 minutes past my scheduled scan time. The scan itself finally took place an hour and forty minutes later. The good news is that my doctor is usually 2 hours behind, so when I got up to his office, I pretty much went right in. Even better the scan showed slight regression and no new cancer. So I can cope with all the stress if I get good results. It certainly made the 3 hour drive home more relaxing. Hardly even noticed the rush hour traffic we were fighting in Boston! All in all a very long day.

Sent by Shaun | 11:41 AM ET | 09-19-2007

After reading your blog today, I thought how true your concluding comments were. I said "Amen!" aloud.
I wasn't going to respond, but moments later I received an email from a young friend that her husband was just diagnosed with multiple myeloma.
So many people with cancer IS wrong on all levels.

Sent by Joan F | 11:48 AM ET | 09-19-2007

Leroy,
Amazing what passes for good news isn't it? Shreds of hope are what cancer families cling too. I'm taking my husband to the oncologist in an hour to get results of bone scan but we recognize the pains he is having all too well. As usual we will probably be told that the tumors arent big enough to worry about so we will just wait for them go grow BIGGER BEFORE WE TREAT THEM!! That is something I will never understand. I wish slow growth for you and everyone else. God bless.

Sent by kathie | 12:09 PM ET | 09-19-2007

Leroy> Good to read folks still connect with you, both here and in RL!

I believe you and I spent the day in Parallel Worlds...or 180 Worlds: our Oncology Clinic was as empty as yours was full! I was able to scan around the two waiting rooms so quickly I almost gave myself whiplash. Technicians were walking around looking for something to do, clerks were actually not _swamped_. An almost uneasy peacefulness...

Mine was just a blood pressure follow-up in oncology this morning after the RadioTherapy treament; my file wasn't even in the rack of today's appointments. They wrote my name on a post-it with the letters: BP. Seconds later the BP was in and it was back to the empty waiting room to await the onc's assessment.

The hydrocholorothiazide isn't resolving the BP issue, so a beta blocker will be added. CardioDept wants lower numbers, and I just don't seem to be able to learn and implement the Alternative and Complementary techniques quickly enough to resolve today's numbers. I'm still walking a mile a day, but after a month of rad tx, I know I'm slowing a bit *shrugs*

Laurel> As you move from curative to palliative, I move from palliative to curative -- with a *nod* to the moment, of course. Our thoughts are with you.

Peggy> I, too, am knitting and distributing what we're calling Cranium Covers, since many of our family and friends are wearing them as winter hats rather than ChemoCaps. I'm looking for more sizing options; might you have suggestions??

Glenda> ...just when I thought I was through with hot flashes, ala menopause, cancer therapies opened up awholenother pocket of them. We highly recommend standing fans with remote controls!!!

On our HEALthWatch:
Tomorrow we begin our rad Booster Treatments. I have a 4" diameter comic-book "POW" mark on the inside of my left breast. Rad Tatoo, Indeed!

Be well.

-dp

Sent by dp | 12:16 PM ET | 09-19-2007

Dear Leroy, You are a true "Trooper"! We have been battling the "Monster" for 14 months now, Fred was not expected to make it thru Christmas of '07, and here we are nearly 19 months later still battling!
Have you heard of the drug "Taceva"? They put Fred on it in January, we are almost to the 10th month and, the last check-up, the doctor said "you are amazing, you should go on a T.V. talk show,as a spokesman for the drug, worst part of it is, it only works on 1 out of every 10 people they put on it!!!
I am so grateful to the Cancer Center here in Marysville, California. Like each and every Cancer Center, they have the compassion of angels, so understanding, kind and considerate of the caregivers, as well as the patient. I am so glad, we were here when Fred was diagnosed!
I hope you have the care and consideration you so deserve, and keep fighting, "it ain't over 'til the fat lady sings" and I haven't heard her tuning up yet!!!!
God Bless you and you family.

Sent by Joyce | 12:30 PM ET | 09-19-2007

Ahhhhh yes, the chemo room. It's been 2 years, and yes, I am very thankful, even though the radiation trashed my lungs, as in pulmonary fibrosis. Sitting in that room once a week for 16 weeks, being away from home and family because treatment is 400 miles away and accessible only by air, I found it very easy to bond with folks. We were all so very different, yet we had so much in common. Most of us (the Tuesday crew, that is) soon found that we preferred a certain chair, meaning that we had the same neighbors week after week. Probably the saddest case I saw was the person with one of the best prognosis. He was an ER Trauma doctor, about as "A Type" as they come. He was so Angry at his inability to control his environment!!We all get angry at some point but this guy had to be treated for it....ulcers, hypertension, insomnia, etc. And of course there was the fact that he was Herr Dokter and was being brought down to the level of we commoners. I'm glad to say that we saved him from himself. What I wanted to say about the Chemo room is that, unbeleivably, I missed it when it was over. A part of me regretted not being able to spend a half day with the folks I'd come to know. We'd shared something huge, a significant part of our lives.

Leroy, I've sent emails to Discovery asking if they intend to re-run your program, but received no response. Thinking back to when I saw it originally I remember the impact it had on my wife and I.....then later when they did re-run it, the impact it had on all those I was able to spread the news to. In the 5 years I've lived this nightmare with all that I've heard, read, seen nothing even comes close to the impact that your Story had. Please.....is there any way??...re-run, offer for sale, whatever. Those in my family and circle of friends that got to see it were forever changed in the way they see me. That's huge!!!!

Sent by James Wallman | 12:44 PM ET | 09-19-2007

Dear Leroy,

At a loss for words. Just glad it wasn't worse than it was, I guess. My mother is so full of chemo she can't hold a glass. She is so sick. I'm just praying this whole year of chemo will do some good. We try be positive, and say, "well, at least it was only in your lungs this time" etc., and that counts as good news in this crazy journey. We just grab on to what gives you a shred of hope, and hang on.

Peace, blessings and comfort to all,

Connie E.

Sent by Connie E. | 12:49 PM ET | 09-19-2007

This disease really is reaching "epidemic" proportions. I feel like we're all sitting ducks. I wish that there was something we could do to advance research and treatment. Can't help but feel scared.

Sent by Donna | 12:54 PM ET | 09-19-2007

I have a tough time with the IV's etc anymore - never used to. My veins used to cooperate beautifully and now just as the tech thinks they have a good one, the vein rolls or something when they go to stick me. I've learned which techs are the best and the last time I went for my bone scan I specifically asked for her because the time before that, I was left with a 5" diameter bruise on the inside of my forearm. The same tech who did that was approaching me again and at the risk of hurting his feelings, I asked for someone else. I apologized but he was actually very gracious about it.

Doris - That question about the burst veins - now that is a scary thought!

My heartfelt thoughts are with all of you every day. I'm grateful for this blog - it helps to know there are those who know exactly what we're talking about.

Sent by Vicky (NY) | 1:12 PM ET | 09-19-2007

Leroy, I was getting a CT scan the other day, and there was a woman getting an IV in who had once been stuck 17 times in search of a vein. I'll never complain again about the 2 or 3 times it sometimes takes!

Sent by Marcia | 1:24 PM ET | 09-19-2007

I am wondering. Is cancer caused from environmental factors, our food supply (who knows what we are eating now)? What is causing this? And, if this is the case, why isn't someone speaking up? Too many of my friends, relatives, and people I don'even know are being struck down by the big "C". All of you, hang in there. The only thing we can possibly do to stop the crowding of "C" wards and "C" doctor's offices is to keep generating the funds needed to find the magic silver bullet. I hate cancer and it's time to stop the madness that cancer causes. I still am fortunate enough to consider myself a "C" lightweight. My heart goes out to all of you who struggle each and every day. All of you motivate me to keep raising those dollars. We are in this together.

Sent by kathy B. | 1:52 PM ET | 09-19-2007

Hi Leroy & everyone,
I'm sorry your results were not more positive.
I'm sorry for patients and caregivers who read and/or post on this blog.
I'm sorry for those who have lost loved ones.
I'm just so sorry for everyone walking 'this walk.'

I guess, I don't feel like putting a positive spin on things today. I think it's ok to just have empathy & sadness some days, as long as you {I} don't get stuck there.

Be well everyone......

Sent by lisa | 2:18 PM ET | 09-19-2007

Yes, I saw the same scenarios yesterday during my day at Dana Farber. I am glad that you were able to see the positive aspect of your scan results.

I don't know if this is a coincidence, but last night my email Inbox had a special Edition Email from the American Cancer Society. It announced the start of a new public awarenes campaign within the spectrum of the national healthcare agenda, to include advocacy with state and federal officials. Here is one paragraph from the email, which some might find useful.

"Now we plan to educate Americans about the need for greater access to quality health care through an aggressive public awareness campaign featuring real people telling their own very real stories. Advertisements airing nationwide will encourage people to visit www.cancer.org/access to learn more. For those who want to be part of the nationwide grassroots movement to make this issue a priority for state and federal elected officials, our sister advocacy organization, the American Cancer Society Cancer Action NetworkSM (ACS CAN), will provide opportunities for volunteers to become an active part of this effort."

This website includes a signup for volunteers for any part of this advocacy effort.

Sent by Sheara | 2:20 PM ET | 09-19-2007

Hi Leroy,

The scans could have been worse. Hang in there. I have scan day coming up on Monday and will get the results Tuesday. I'm just hoping for another "stable". Although there is a chance this transpant could be killing something. I have been "relatively stable" since July and it feels good. This morning on the way to clinic I was thinking about how good I felt. In March one doc told me I should expect to be in a lot of pain by August and dead by December (I did push for specific dates). I don't know if he was wrong or if I'm just on borrowed time, but I will take it.

Jill

Sent by Jill | 3:11 PM ET | 09-19-2007

Not sure what is worst - a long day of test and results or 3 days of stretching the test out. I had a abdominal and chest CT Monday. Bloodwork Tues. and getting the results from the oncologist on Thurs. this week. The waiting is the hard part I think. I would rather have a long day and get it all over with at once.

Sent by Cathy - Columbus, OH | 3:49 PM ET | 09-19-2007

Your blog reminds of Sex in the City, without the sex. Maybe it should titled, Sick in the City. I can only chucke because my husband of 30 years is undergoing treatment as I write. I read your blog everyday and pray you continue to thrive.

Sent by Ann Jakowsky | 4:54 PM ET | 09-19-2007

Hi Leroy,

Thanks for your blog. It's an inspiration to many, healthy and struggling with health or otherwise, and gives some of us, vicariously perhaps, a chance to work out some issues that are front and center to you.

Easy to say, but difficult to keep saying, is that perspective can change the way we feel. The 'wrongness' of illness in general, and cancer in particular, is obvious to everyone, as is the intolerability of suffering to compassionate human beings.

I hope this doesn't sound like a far out suggestion, but if you and your readers do an internet search of the terms "powers of ten," you can link to a site that will allow you to pan and zoom from the subatomic level of matter to 10 million light years from earth--and important points in between. Why? For a graphical sense of perspective. Perspective can be metaphorical as well. Somewhere in the midst of the very small and near and the very large and far away, it seems like a privilege to live on the human scale.

Sent by Alan | 4:56 PM ET | 09-19-2007

Hello Mr. Leroy Sievers again,
Since I don't know you personally-I feel like I need to address you formally-really I feel like say the Honorable Mr. Sievers or Sir Sievers---anyway I am praying for you to "catch your breath" and of course for everyone. I've been thinking about what you said about Catching your breath before "going to work" again. I really understand this well. I'm working on pain management that I thought I would share. This body work that I am doing talks about not forcing the breath-like consciously breathing really deep but just really noticing your Natural breath so what I notice when I just sit quietly with my eyes closed for a while and notice this Natural Breath -- I notice that I SIGH more which I've been told is the ALLOWING the breath to go deeper. Basically it's just good old fashion deep relaxation like when we are asleep. By doing it consciously though you notice the pain slips away. It takes time. It's like when you are really sleeping in a deep sleep there is no pain. Anyway I'm learning. It seems that us humans are so busy busy doing doing that it is hard to sit still(even in other peoples presence) Thank you for sharing and letting us share. With love,

Sent by Linda | 5:24 PM ET | 09-19-2007

Hi Leroy, Your post today really knocked me out. Went along with my usual interest until the last paragraph. It's just incomprehensible, isn't it? That this gorvernment is spending billions and billions on a war which has been a lie from the very beginning, while it's citizens are dying daily by the thousands with deseases which need reasearch dollars to be irracdicated. All those new people in your hospital cancer areas - it's such a national disgrace. A moral disgrace. There aren't any words for it. All one can do is cry and shake one's head.

And then we see things like James Gandofini's "Alive Day." Why aren't we all in the streets, AGAIN?

Sent by joanne | 6:04 PM ET | 09-19-2007

Hi Leroy,

I'm sorry about the spinal mets increasing, but since you didn't mention the lung mets I'm hoping that means they are stable. Stability is such a great word....

Yes, too many experiencing the life changing words "you have cancer." Hang in there!!!

Sent by Suzanne Lindley | 7:31 PM ET | 09-19-2007

Hi Natalie,

You and your husband can advocate to have the person you want with you while you are receiving chemotherapy. This is your right as a patient. It is important to your health in all ways to not feel alone while going through this stressful time; same goes for your caregiver. Don't be a "good" patient and go with the flow on this one. You need your loved one with you. Especially in this. It's amazing what you can do inside a system that wants to deny you something so important that you are needing, if you only stand up to them. Maybe try telling them that your policy is to only have your chemotherapy when your husband can be there with you. (I've done that successfully, when a hospital wanted to keep my partner out of the pre-op area, and I knew she had to be with me, or I simply would not have been able to go through with the surgery. Not all of the staff was thrilled with me, but I did get what I needed, and in the end, that's what was the most important thing. And believe me, I don't enjoy making waves, but this struggle is so hard, I've decided that if I need something so simple, as a loved one with me, then I and my loved one, will stand up, speak out, and make it happen.)

Good luck. email me if you need help, or someone to advocate for you in this matter. kblankenship5522@comcast.net

Sincerely,
Kim Blankenship

Sent by Kim Blankenship | 12:05 AM ET | 09-20-2007

Hello, I am the women you met yesterday. My scans turned out unchanged. That's good news. No progression. I am sorry yours was not the same. I enjoyed meeting you and Laurie. Cancer has given me the boldness to walk up to a stranger in the hallway and introduce myself and speak of such personnal feelings. Cancer has given me many things. Not all bad. I had lost my inner joy after my diagnosis 18 months ago but have regained it. Stronger than before. Each day I wake and think I am a lucky woman. I am here. I can enjoy my family, friends, or just the wind on my face for one more day. I am lucky to have cancer at this time - not 10 years ago when the medication I am taking that is holding me in remission hadn't been discovered yet. I am lucky there are PET, CT, and bone scans without which chosing the best therapy would be more difficult. I am lucky to be getting a vaccine that may teach my own body to remove the cancer cells just like it does the flu. I am lucky to have been in a crowded waiting room and met a kind and caring couple who if they could would cure the world. I do not believe in letting this cancer kill me. I tell it just that almost daily. Cancer has given me many things but it is time for it to leave my body and let me continue to feel joy for all that it has taught me and leave me to enjoy the blog of an inspiring man I was bold enough to say hello to in a crowded hospital hallway.
Oh and by the way, Leroy, coughing does work. I felt so ridiculous that I started laughing and forgot about the pain. Thanks.

Sent by Patty Fitzgerald | 12:10 AM ET | 09-20-2007

In his brilliant book "Love, Medicine & Miracles" Dr. Siegel states that just fifteen percent of his patients take an active role in improving their health by utilizing some of the many so called "cures" out there like juicing carrots and ginger, or using therapeutic oils like frankinsence. Seventy percent of his patients just do whatever their doctors tell them to do which is either harmful drugs, surgery or radiation. The other fifteen percent just want to die. Which type of patient are you Leroy?

Your friend,

Chris

Sent by Chris | 12:13 AM ET | 09-20-2007

Leroy, I have spent plenty of time in and around Hospitals, but no time compares to the Cancer Wing. We should get extra points for time spent in this place. I, like you, don't look sick, but I wonder how will I look in a year? Will I make it a year? This whole thing bites! Really! Glad you found laughter in this place! Stan

Sent by Stan Wozniak | 2:01 AM ET | 09-20-2007

Hello, Mr. Sievers and everyone,
I am thankful to you for your columns and this is the only blog on the web where I feel an infusion, no pun intended, of courage. My prayers are with you and everyone else who has heard those sickening words "you have cancer" or any form those words come in these days.

The first time I realized cancer was a chronic illness was in the early months of my chemo treatments. I listened to other patients just chatting about how many times their cancers had returned. I am new to this cancer existence and I began to understand that cancer is not like having a gall bladder surgery, once done and its over. No, cancer is still there hiding until it finds the right weakness in the body to spring to life again stealing parts of our lives or changing them forever, or ending them.

It was a fact I had to accept, so borrowing a bit of the courage I had gathered for another cycle of chemo, I asked my oncologist a simple question, "Cancer is not just a disease a few people get now, and it is becoming a chronic disease?" Her answer was simple, "Yes, that is true." My mind reeled with the knowledge as we discussed it a little. I think I accept it now, but I must admit I fear it as well especially seeing some of the other patients who I wonder if I will look like down the course of my life.

I guess I subconsciously wanted to help those in the waiting room. I found I can make people smile. I don't do it intentionally, but there is a part of me that is klutz or clown at any unexpected moment no matter how I am feeling, pain or no pain or heading to the lab or chemo. During being myself I saw people smile in that waiting room and they talked to me, a total stranger. If that is a gift that I can give to others while I am going through this than so be it.

We all know that by sitting in those cancer waiting rooms we belong to an odd family of sorts. It is the same in this blog, at least to me. We share something we wouldn't wish on our worst enemy, but it is a refining fire that shows us who we are and rebuilds us. Minor things that once were dreaded or scary are now seen from a different perspective and I find non-cancer patients have no clue. But, I also find through reading your columns, Mr. Sievers, and the comments of others that there are many facets of the cancer existence that I don't have a clue about either and that scares me. I mentioned in the beginning, many examples of courage I find here to keep that spark of life alive no matter what. Again I thank you each for being my mentors.

Sincerely,
Bobbie

Sent by Bobbie Hollis, Texas | 4:56 AM ET | 09-20-2007

I'm on a clinicl trial for stage IV colon cancer.It may or may not help me...I hope it pushes the research forward. For the number of people who die every year from it, colon cancer does not get much attention.
Got my first" opportunistic infection" this week. Fine in the morning, pneumonia by afternoon. Even when you look "fine" there is so much under the surface rashes, hair loss, low blood counts. Chemo is not a fun ride, but it's pretty much the only ride in town when you have metasasized. At some point I'll probabaly give up, but in the mean time, the moments spend with my wonderful husband and kids, girlfriends, and just a spring or fall walk in the garden have taken on a new luminosity. Things become more precious as they become more rare

Sent by Janice | 7:32 AM ET | 09-20-2007

You are soooo lucky to get your results the same day - my daughter has to wait for days for scans or blood results. The thinking about what they will be is terrible. This time the scan results were good - still waiting for the blood test. Am hoping for the same type results there.

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