As I look back along my cancer experience, I feel that I needed to learn things as I went along. Getting too much information up front would have been more than I could process. The we can do to help those that follow would be to provide non-medical advice. I would fear the likelihood of misinformation being spread if too many individual patients whose knowledge is based on their experience alone began to offer advice on the medical side. Strategies for coping on the other hand would be well shared via hotlines and online fora. Anything more strikes me as dangerous.

Sent by Anna | 7:28 AM ET | 05-30-2008

Hi Leroy, here are a couple of tips for pancreatic cancer patients and caretakers.

When my late husband was first diagnosed with stage 4 pancreatic cancer, he was given very little time and no Hope.

I started searching, night and day, on the internet and came across the John Hopkins Medicine Pancreatic Cancer Center. Besides the official, factual information, they provide a discussion board of patients and caretakers. It was there that I found answers to my questions, personal experiences with treatment options, tips for dealing with symptoms and side-effects,and, most importantly, support and Hope.

I also discovered 2 organizations who are dedicated to raise much needed funds and promote research to battle this deadly cancer - PanCan and the Lustgarten Foundation.

I'm sure that my husband lived 6 good months beyond his prognosis partly because of all that I found on the internet and transferred to him.

Sent by Marilyn | 7:43 AM ET | 05-30-2008

Another Friday morning Leroy! May your week end be a really good one. Sounds as if you have regained most of your ole self. Are you back on some Chemo Therapy? How or should we try to tell a "newcomer" to our group what to expect from Chemo? If I had listened to all the others who were getting their treatment years ago, I would have been scared stiff! We are all different and the chemicals they use are different. Everybody is different and reacts differently. Your state of mind and attitude make such differences. For me, as a woman, I believe that I was alright with the changes in me UNTIL my hair fell out! I thought that I had escaped that horror until I woke up one morning while visiting our in-laws in SC and my hair was all over the pillow. Just like that! We took my beautiful, white, clumps of hair outside and left it under the trees. Then we all watched and enjoyed what followed. The Bluebirds began chattering and they eventually picked up every bit and lined their Bluebird Boxes with it! I had to spend the next few days of our vacation searching for some shop or Salon where I could purchase some sort of wig. But 25 yrs ago that was an almost impossible to find any ash blonde or white wigs. I went into work next Monday with a brown one and was the laugh of the office for days 'cause no one recognized me. Then the eyebrows fell out and all other body hair followed. Definately, the loss of a woman's "crowning Glory" was the worst! The Cancer was secondary to me at that time. My mind was SO certain that I would beat this thing and here I am - still here!

Sent by J C R | 7:44 AM ET | 05-30-2008

Leroy,
I have been following your blog for about a year now. Would it be possible to do a blog on what worked/did not work for you regarding your battle? If you could rewind and start over what would you do differently? All the best!

Sent by Dennis | 8:00 AM ET | 05-30-2008

Leroy,
What a wonderful, marvelous, terrific idea!!!! I nominate you for the Nobel, Pulitzer,Emmy, Academy and whatever other award I can think of. You have just found the 2nd purpose of this blog.

Bless you,
Kim

Sent by Kim E Moore | 8:07 AM ET | 05-30-2008

Dear Leroy,
In my opinion, the best way to help others regarding what it means to have cancer is to somehow convince the government to make the disease their NUMBER ONE priority. And as far as cigarettes go, THEY MUST GO!!!!!

Sent by Elaine | 8:08 AM ET | 05-30-2008

AND LIFE after treatment - NO one tells you or warns you about that! Its self discovery and LOTS of research.

Carrie
cbelair.wordpress.com

Sent by carrie Belair | 8:35 AM ET | 05-30-2008

During my husband's cancer I learned that gentleness had more value than just about anything. Doctors and nurses used it but family members need to temper their concerns with it and everybody else too.

Sent by Irene | 8:51 AM ET | 05-30-2008

I know that helping others who are new to the cancerworld is a gift that we can all give! When I was initially diagnosed, I was scared, uneducated, didn't know what questions I should ask beyond the obvious, where should I go first and why, what doctors should I see, etc. Fortunately, my panicked call to my internist got me in to see him and he started the process of figuring out which doctors and who specifically I should see. At about the same time, I stumbled upon a melanoma website called mpip.org (Melanoma Patients Information Page)which was founded to honor the memoryof one lost to melanoma. It is a godsend for all melanoma patients and caregivers. It has everything- information, education, posts by patients and caregivers, links to clinical trials, patient histories, a memorial page, a chat room, etc. If this site could be replicated throughout the cancerworld for each type of cancer, it would and could do so much good.

With that said and perhaps associated with this blog, there could be another linked blog created where patients and caregivers could post their questions, share their stories and treatments, doctors and hospitals to contact, or just vent, etc. and the bloggers here who have the type of cancer as the poster could respond with give help as required. I know this done somewhat now but perhaps another blog devoted to Q & A's would be helpful.

In the past two days I have had two "new" melanoma friends contact me as a result of my posting my medical history in dealing with melanoma at mpip. I can share my experiences, the good and the bad and hopefully help make their journey in the medical maze in dealing with melanoma a bit easier and faster and with a more educated view.Equally as important, give each one a reason to Hope. I'm not naive but I do believe that Hope (I have numorous examples to cite of Stage IV'ers living with melanoma, others who were Stage IV and are NED today)is an ally in the fight.

Terrifc idea Leroy! Let us, with your leadership, find a way to help others.

Sent by Al Cato | 8:54 AM ET | 05-30-2008

Hi all,
Sometimes, just sharing stories can help. I loved reading JCR's story about the birds using her hair in building their nests. Made me smile! It seems so long ago when I went through the hair loss thing. It wasn't so hard for me, but it was extremely difficult for my 6 year old son, who didn't see things as any different until that point.

I'd like to think that our presence and our willingness to share both hope and our experiences might be helpful, at least for starters.

Be well, everyone!

Sent by betsey in albany ny | 9:08 AM ET | 05-30-2008

Leroy - this is a subject dear to my heart. Because I am a librarian, I naturally started searching for info on the day of my diagnosis, after the hospital gave me a book about breast cancer from the Nat'l. Cancer Institute which was four years out of date(!!)

I found wonderful info on the internet, and a lot of garbage as well. Learning to distinguish reputable, reliable sites from crackpot sites was important. The single most helpful site was People Living with Cancer, now called CancerNet from the American Society of Clinical Oncology. (www.cancer.net will get you there.) I built a whole list of favorites, local and national sources, to which I referred to over and over. There should be a book on how to do such research.....

In the end because of this research I was able to make wise choices, and understand what was happening to me and what to expect. I also found many references to local resources, and to discussion groups which were informative and encouraging (like your blog!)

Learning how to evaluate websites is crucial. There are a number of criteria, such as determining the sponsor- is it a cancer hospital or some company that wants to sell you a miracle cure? How recently has the site been updated? Who are the contributors and what are their credentials? etc.

And remember, each person is different. Because someone tells a story about how they suffered or how their lives were cut short, your situation may be different in a hundred ways. Don't assume the worst because of what you read!

I could go on and on, have to stop myself now!

Sent by Wendy | 9:19 AM ET | 05-30-2008

Oh my...those first days of absolute terror and the certainty that death racing toward me.

Newbies: Ask your questons and we will try to help with our experiences, gained information, and emotional support.

My main message: Cancer is a battle to be fought, use all the weapons you can find and fight dirty if necessary.

Peggy

Peggy

Sent by Peggy | 9:19 AM ET | 05-30-2008

I was thinking the same thing this morning. I am joining friends of ours on a tour of the Cancer Treatment Center of America in Zion today. Jean was diagnosed with metastatic breast cancer and would like to check out the facility at CTCA. This is where our son went for treatment and it was a great place to be. So I was thinking to myself, what do I say or do to make Jean more comfortable or help her understand what to expect. Then I realized we probably all have to go through this journey in our own way and I just need to be there for whatever she needs. Sometimes a person's presence is the best comfort.

Good blog Leroy. I look forward to reading the answers of others. Thanks!

God bless you.

Judy

Sent by Judy Voller | 9:21 AM ET | 05-30-2008

Some of the best information I got about dealing with chemo and radiation for my breast cancer was not from my doctors, but from a wonderful woman named Darlene who owns a store for cancer patients called Lovely Lady here in NC. I went there to buy a wig and left hours later with tons of useful (and very accurate) information about things like exactly when my hair would start falling out, what it would feel like, differences between radiation creams - the kinds of things that either doctors don't know or just don't have time to tell you. I just happened upon this woman and her store - it would be nice if cancer doctors and hospitals made more of an effort to get this kind of informal but incredibly useful and important information to their patients.

Sent by Gretchen Hoag | 9:21 AM ET | 05-30-2008

I too LOVED JCR's bird nest story, beautiful!!

For me....I found that I wanted all the information I could get. It helped me feel like I was in charge of my treatment as much as I could be.

I also knew that everyone is different in how they respond to treatment. Some people sail through chemo with no issues and others have a hard time, same with radiation etc....

I started a blog last august when I started my radiation treatments. I wanted to document my experiences so maybe someone could see what one person went through. If someone was due to start radiation it would give some idea of what its like.

I also know of many people who didnt want any information at all, they wanted to just live their lives and do what the doctors told them to do. At first I couldnt understand that, but now I do. Sometimes its just too overwhelming and scary to hear all the details.

Each individual is unique with their experiences.

www.radiationdaze.blogspot.com

Sent by Jenn | 9:25 AM ET | 05-30-2008

I was in the hospital for my mastectomy at the same time as a casual acquaintance. Same surgeons, back-to-back surgeries. She had already finished chemo and radiation (long story) and became my shoulder to lean on. I bugged her with questions constantly. We probably exchanged 5 or 6 emails a day. She's no longer a casual acquaintance!

I can never pay Andrea back for the support she gave me, but I can pay it forward. When a coworker received her diagnosis I became her go-to person with questions and concerns.

That's the best we can do. No amount of reading or websurfing can replace someone who has been there and done that.

Sent by Christine | 9:26 AM ET | 05-30-2008

I'm an eight year lung cancer survivor who never expected to live. A pneumonectomy and the removal of my left lobe leaves me in relative good health. I would like to know what patients can do or say to prevent their docs from offering standard bull shit to anxiety ridden patients. They think that they are "protecting" us when all they are doing is denying us crucial information that, if given freely would allow us to make logical plans for the long haul. "Six to nine months' is the automatic answer to those of us who ask "how long do I have." We know it's standard and I, atleast, would have preferred "we don't know' to the paternalistic "Six to nine months."
I also think it is impermissable for the hospital doing the tests to hand out an AMrican Cancer Soiety handbook upon admission for this or that test which lists all support groups to lend a hand and some moral support, except for lung cancer. Seeing no support grouplisted for lung cancer meant, to me, that we didn't live long enough to have one. I complained about this repeatedly and said to my doc, even if you only put in there "lung cancer support group in formation," it wouldn't leave me with the sense that there was not one because we all died.
Finally six years after surgery, the hospitals puulled together a group of cancer survivors of all kinds to list under the heading "support groups.; i have now spoken at several of these and in mentioning how tai chi had helped me, they now invite my tai chi group in a couple of times a month to do a demonstraation.
I also think it is important that oncologists keep a record of successful patients who would agree to talk to the newly diagnosed. KY has the highest number of lung cancer deaths in women but no one gave me a name of someone who had been here before and who might have shared his/her experience with me.
I also think it didn't help to have my oncologist agree with me about not being able to make long term plans.
In fact, the life I now lead with one long and cancer free is the life I led prior to diagnosis. It's detection is not an automatic death threat anymore. So let's lighen up a little bit.
And yes, I smoked. I smoked a lot and had I not left my position as Director of the ACLU of KY I would never have stopped. The job was too stressful for me to add stress to my live by giving up my death line.

Sent by Suzy Post | 9:29 AM ET | 05-30-2008

Not the patient a care giver, nurse with oncology experience, however.

When the diagnosis is delivered an extra set of ears equipped with paper and something to write with is good. Even the person who is the extra set of ears may shut down.

Write questions down and bring your pad of paper to each visit, write the answers down you get.

The internet, WOW what a venue to allow patients and care givers to be better informed and aware of treatment options.

Understand what works for one may not work for another.

You may not like your oncologist or physician and being able to work with them as they work for you is important. Don't be afraid to make the switch if you feel you need to.

Kim, Elaine and Al, I could not agree with your more. The government needs to assist agencies in finding a cure and better treatments, cigarettes cause more problems than good, and believe in your treatments and treatment goals HOPE is extremely important in the fight.

Leroy and all have a super weekend. Thanks to all.

Sent by Sue Chap | 9:31 AM ET | 05-30-2008

Hi Leroy! Have a good weekend friend!

Dad will be having his 4th cycle of 6 a week from Monday. He still hasn't lost his hair, but it does look kind of frail and fuzzy now. (We shaved it at beginning of his chemo treatments.)Since it has not come out after 3 cycles do you think it will come out?

Diagnosis before chemo began was 8 - 16 weeks. I've not been able to ask how much time we might be able to hope that these 6 cycles of chemo might buy. There will be no further treatment following the 6th cycle.

Thank you Leroy, and thanks to all of you for sharing. God bless you all and keep you safe until we meet again.

Sent by Linda Lee | 9:39 AM ET | 05-30-2008

Perhaps a blog or wiki with comments submitted by those who "have been thorough it". Sections for chemo, radiation and surgery.
Harry

Sent by Harry Jones | 9:48 AM ET | 05-30-2008

"For those of you new to cancer world, or who are facing a new challenge ... how can we help?

Leroy Sievers"

Well, I got a question: I believe the prescription drug Amantadine might be affective against some tumors, by affecting the blood supply. The question is: How would you get a researcher to check this out? I've talked with a few doctors and they show almost no interest.

I believe IF THE DRUG WORKS it could prolong the life of Sen. Kennedy should he need it, and others with the same thing. Although it probably doesn't work like "Bevacizumab", if it works, it may have similar results at a fraction of the cost.
http://en.wikipedia.org/wiki/Bevacizumab

Anybody have any ideas: How to get Amantadine checked out by a cancer researcher???

Sent by Martin | 9:52 AM ET | 05-30-2008

Hi Leroy and all: Great idea today! I haven't responded for awhile the beast is getting tthe better of me. No eneregy these days and I so much want to get out and work in my flowers. I do read you every day. You all help me get through this nightmare. I agree with Betsy sharing stories help the most. I'll try to think of something and response back diana kc

Sent by Diana Maloy | 9:58 AM ET | 05-30-2008

You are putting your experiences to great use by your willingness to share in this blog. I am not new to the cancer world (one year breast cancer survivor), but for me your blog has provided immense support and knowledge over the past year. Because you touch so many in the cancer world with a variety of types of cancers, it would be extremely difficult to structure an "ask medical questions" component. Leroy, thank you again for sharing your thoughts and experiences with us. As my kids often say, "you are awesome!"

Sent by Susie R. from OH | 10:06 AM ET | 05-30-2008

I have just had my 3rd chemo for prostate cancer (taxotere). I no longer have pain in my bones and I have not had any serious side effects, other than fatigue.

When I was first diagnosed, I searched the Internet for information, including survival rates. I was devastated to see some of the numbers. Now I understand that these are old numbers based on old trials and treatments. My treatment is too new to be reflected in these statistics. I should have realized that each patient is different and that no one can predict my outcome. My doctor even told me this, but was encouraging nonetheless.

I tend to read between the lines for bad news. If a doctor says "don't hesitate to ask for drugs to help with the pain" I should not turn that into some kind of dismall prediction. If I feel new pain in a joint, I should not assume that my cancer is now out of control. If I have trouble with physical activities, I should realize that there is a lot of healing taking place in my body that needs energy.

I think I will reach the point where my positive thoughts predominate and I will stop looking for the cloud inside the silver lining. Today, I look out the window and see God's beauty all around. This precious gift comes with the disease. Soon the disease will be a memory, but the gift will remain.

Sent by Tom Escott | 10:07 AM ET | 05-30-2008

A support group - online, blog, meetings, or by phone - any of these.

And Leroy, this blog has meant SO much to me. Regardless of the topic of the day, it brings me peace. Your writing here very much matches your voice - it has an even, steady, comforting tone. You and your readers have provided me with great solace.

Sent by Lesa in Kansas | 10:10 AM ET | 05-30-2008

Good idea on the "what can we do?" column today. Reading a few responses before writing this I see some of the same thoughts I have.
With the permission of the editor of a little circular here called "The Lighthouse", printed for my brother Knights of Columbus, I wrote of my experiences with Cancer for a few issues. It's truly amazing how much you can write once you start!
I am still facing more procedures, chemo and more consultations in the future.
However, you Leroy, have helped already with your Web Log and all the responses you generate. Like one person wrote, everyone has a different perspective on what they went through. Also I agree we aren't the ones to give medical advice.
However, just reading what you have to say, Leory, and what others write is comforting. It's a horrible disease, and terrible for some people. Keep writing, it's good for all of us!

Sent by Vic VandenBulcke | 10:32 AM ET | 05-30-2008

Leroy, Everyone tries so hard to ease the transition from normal to not. I know they mean well, but unless you have taken the Chemo or Radiation you can't really know. I guess the most important thing to remember is the treatment effects everyone differently. You have to be able to adjust, almost on a daily basis sometimes. What you want to do becomes less relevant, it is about what you can do. I guess you have to be able to manage the disease, or it will manage you. Thoughts, and have a nice weekend everyone. Stan

Sent by Stan Wozniak | 10:38 AM ET | 05-30-2008

Hi Leroy, it saddens me to see you so DOWN,,,,,boy I am glad THAT I was not like you are. Of course I could easily tell you that my faith in God wa #1 to get me through and not everyone has God in their hearts or minds. Let me tell you they gave us classes on my 2 & 3 cancer pre-chemo, but the classes were to let us know the side effects and since we were supposed to loose our hair what scarf to wear, but sincerely I said to myself if I loose my hair I will jest go Kojac style a-la-bold (hahahaha) see you have to have a little of jokes with this illness and I will give you a couple of important rules for you and who ever reads this blog comment,ok?? Rule #1 your doctor only practices medicine..get it practices, 2-once you get an illness no matter which one it is you are never going to be the same 3-you have to accept the way you are and continue to get better on your side, 4-be positive damm I read you always being so negative just give thank to God that you are alive no matter what ails you...and most important one 5-whenever you feel bad or think that you are bad look to your side; positively there will always be someone worse than you..look at sEN Kennedy, who knows how long he really has, then look at PATRICK sAWYZE a pretty young actor, good looking if I may so, and he has the worse of the worse PANCREATIC cancer, and are his doctors telling us how long he really has to live, and in these cases what they have to do is live to the fullest expectations of their last days...and not complain so much..it is hard but get it through your mind and heart..I have had 3 different types of cancers 2 of them are the top 2 cancer killers in the USA Lung cancer and colon cancer, and then I had cancer in the head of the pancreas NOT ONE RELATED to the other ones, and I have neuropathy, I have lost some of my eyesight and hearing, but all I can proudly say I AM A SURVIRVOR and you will see me celebrate my real b'day in July, then in march my 2nd year of survivor of the lung cancer, and then in June 1 my 4 year survivor as a colon cancer and then in June 6 the 2nd year survivor as a head of the pancreas cancer..so kiddo (as my oncologist calls me) enjoy your life and bwe thankful to be alive...but mainly put God in your life, I read you and I do not see the presence of God within you, I do not care what your religion is, just keep God ther..ileanacuba@yahoo.com

Sent by Ileana Arriola | 10:38 AM ET | 05-30-2008

My daughter stepped in and took over my life and received wonderful books from her friends around the country.
I became acquanted with my disease and started to find services available to those of us with cancer. The American Cancer Society provided a free wig, and a class on how to wear makeup and scarfs and gave us $300 worth of make-up from cosmetic companys for free. Called Look Good Feel Better. Then I found a flyer in the doctor's office about an exercise group that they also provided. I have been going to this class with other women at different stages of recovery, four times a week for the last 6 months.
There are groups that meet and everyone shares how they cope. It is like belonging to an exclusive cllub. But you have to reach out and say YES to the help that is offered.
"Just Get Me Through This!" is a practical guide to Coping with Breast Cancer, by D Cohen and Robert Gelfand MD

Sent by Peg Heglund | 10:38 AM ET | 05-30-2008

What I mention to parents at the hospital is to tell the doctors to talk to them like they just left the room. Otherwise not much else comes to mind. It could be an overwhelming experience if one had all the information up front.

Sent by Lisa | 10:40 AM ET | 05-30-2008

Leroy- PLEASE PLEASE turn your blog postings into a published book. This will be a huge help to many many people. Would NPR allow this? Find out. Your writings deserve publication and wide distribution. Not everyone uses the web. Hard copy books are lasting and can reach many many folks. Your fan in NJ- Barbara

Sent by Barbara Goun | 10:43 AM ET | 05-30-2008

Good Morning, Leroy. As I have said before, this blog allowed me a 'safe place' to talk about what scared me. I could not say these tnings to family and friends because I knew it would scare them too much. In practical terms, I could not bare to think of waking up with my red curly hair all over the bed so I shaved my head after my second chemo. It put me in charge, in a way, of being bald when I was in control of nothing else in my life.

Sent by glenda | 10:49 AM ET | 05-30-2008

It is hard to tell someone else how they will feel or when to expect a side effect, as everyone responds differently and there are so many variations of treatments. What I did find that helped others was telling them what I could eat that didn't make me ill and what things I could drink that helped keep my system up and running. And that it's okay to tell your family "no I can't do that right now, I need to rest for a while." The biggest help of all is the willingness to listen.

Sent by Kris | 11:17 AM ET | 05-30-2008

A book from the blog postings is a great idea. I too think that a dumping of info at the beginning is way too much to manage. We all need to parse out our findings at different levels. What a great blog today. Thank you and have a wonderful weekend. With care.

Sent by anne lumberger | 11:24 AM ET | 05-30-2008

Morning sweetie
I think this is an absolutely brilliant idea. Who better to answer questions about this scarey stuff than people who have been thru it.
Have a wonderful weekend and keep writing, I so look forward every morning to what you have to say.

Sent by fay | 11:34 AM ET | 05-30-2008

To Ileana:

I must respectfully disagree with you. Whatever makes you think that today's blog shows that Leroy is "down" -- and whatever gives you the right to pass judgment on his (or anyone's) spiritual state?

I find it inexcusable that you say you don't see God in Leroy's heart and that's why he has negative experiences and thoughts.

I'm glad for you that your belief in God is so strong that it has helped you coast happily through your illnesses, but that is not the case for everyone. No one needs to feel that the tough times are due to some kind of failure on their part.

Everyone is unique -- and everyone has a different path. Our goal should be to support one another in this journey, not to judge others.

Sent by Brenda | 11:59 AM ET | 05-30-2008

After my mastectomy, I met with my oncologist and we decided on the chemo protocol that I would follow. I was told that I would loose my hair after the first treatment and that I wouldn't have any nausea. That was it for side effects. On the first day of treatment, I saw my oncologist again and was prescribed 100 anti-nausea pills -- what? Well -- said my doctor -- you never know. I then went to chemo and was given a DVD to watch on chemotherapy. It was a good idea but it was so non-specific to me and my protocol that I didn't know what would apply to me and not apply to me. I took pages and pages of notes. Thank goodness for my chemo nurse. She was the one that got me through it, answered my questions, gave me good solid information, and provided the calm, caring support I needed.

I never have had nausea. I lost my hair after the 3rd treatment. And then, I lost my eyelashes and eyebrows. I didn't think about that being included in losing your hair. How stupid could I be. Too many made for TV movies showing a beautiful, bald cancer patient with strongly marked eyebrows and lush lashes. Then -- new shock -- I'm still on the same chemo protocol but my hair is growing back in now. The doctors say that it doesn't mean that chemo is not working anymore.

Bottom line -- there has to be someway of helping new cancer patients deal with their specific disease and treatment protocol. I spent many a night surfing the web for more information. Let's figure out a way to make this one thing about cancer easier.

Sent by Carol in Nashville, TN | 12:01 PM ET | 05-30-2008

Hi Leroy,

I'm dealing with what we're calling "Round 3", metastatic breast cancer. Round 1 was last year, Round 2 was a brain tumor which was eradicated with gamma-knife surgery and this round involves 3 tumors on the chest wall and in the axilla and the chemo, Xeloda.

I'm not sure if this is for folks newly diagnosed, or something for us all to think about. I also think it's one of the Mindfulness precepts: "There is more right with me than there is wrong with me today."

Holding that thought allows me to step back a little from the panic precipice and count the blessings I have.

Sent by Jackie S. from Santa Fe, NM | 12:14 PM ET | 05-30-2008

I am going through this struggle right now on my decision to either do or not do radiation. I already have primary lymphedema and am afraid radiation might make whatever time I have left to live, a nightmare. I have seen many doctors and no one has an answer. I have to make the decision myself. And this is so scary. But someone's got to be the boss. I think this is why and when I started to do my *own* research. If I have to make the biggest, scariest decisions, I better know what I am talking about. Or you could help me by making my decision for me. That way I will know who to blame if things don't turn out perfectly. :-) haha

Sent by Janell | 12:14 PM ET | 05-30-2008

What is really helpful after you sit like a deer in the headlights while someone tells you "You have cancer" is to go to subsequent appointments prepared. Bring a small tape recorder and record the doctor appointments. Listening to them again will help you to remember what was explained, and understand it better, to share it with loved ones who couldn't be at the appointment, and to bring up questions that you didn't think of while you were at the doctors' office. If you have someone who can go with you, so much the better. You may only absorb about 10% of what you're told, if that, and another pair of ears is invaluable. Write the questions that you want to ask down and show the list to the doctor at the beginning of the appointment. If the doctor slips into medical-ese, and it's going right over your head, stop him or her, and ask for it in plain English. If important questions occur to you after you've left...call back. There are no questions that are stupid, and you're not "bothering" the doctor by asking more questions. If you get the sense that the doctor IS bothered by your questions, that's probably a clue that he or she isn't the doctor for you.
Get second opinions. It's comforting to look on the doctors as your saviors, and put your trust in what you're told at the first appointment, but not every doctor has the same level of experience, best approach, or level of commitment. This is one of the most important relationships in your life, and make sure that it's a good fit for you.
There are a lot of great resources out there, so take advantage of them. The Wellness Community is available in about 15 states, and you're lucky if you have one near you. They provide free support and education as well as exercise, art, music, and hope to people in all stages of cancer regardless of diagnosis, and cater the education to newly diagnosed as well as "vets". Gildas' Clubs were formed based on the Wellness Community model, and are also a great resource.
If you have breast cancer, breastcancer.org is an amazing resource. There is up to date information on treatment, research news, diagnostics, as well as a 24/7 live chat room and discussion boards.
Living Beyond Breast Cancer is a sister organization, founded also by Dr. Marissa Weiss, a breast cancer radiation oncologist who founded and still runs breastcancer.org. LBBC focuses on education, and has wonderful educational conferences with nationally prominent oncologists, social workers, nutritionists and others. They also have live teleconferences on all aspects of breast cancer, and have a Survivors' Helpline which is staffed by women who are or have dealt with breast cancer themselves. The helpline number is 888-753-5222.
Most of all, realize that you are NOT alone. There are many other people who are going through what you are, and it's to your benefit to find them and talk with them. Support groups are a great way to do that, and some strike up friendships while in treatment. Talking to someone who knows first hand what you're going through helps to avoid your feeling isolated and alone in your experience.
Don't fear getting emotional support or counseling when you find that coping is not happening. The stress of having cancer is enough to wear you down, and to leave your body unable to produce the needed neurochemicals to keep your mood elevated. That's why God makes psychiatrists, cancer counselors, and anti-depressants. (joke) There is no shame in getting help when it's needed. We all need to be able to cope emotionally to get better. A big part of that is getting enough sleep, so if you're not, for heavens' sake...tell your oncologist, and KEEP telling him or her if they don't act on it at first until they do.
So....there you have it, my survival guide for cancer. No platitudes about the "gifts of cancer", or "staying positive", just the tools that have helped me to keep on moving forward. Blessings on your way.

Sent by Nancy K Clark | 12:22 PM ET | 05-30-2008

Amen to Barbara Goun's concept of publishing your blog and postings in book form -- What a wonderful resource it would be for those outside the Leroy's Army blogosphere. And - dare I say - God help Ms. Ileana Arriola in her misguided spiritual assessment and proselytizing. Her lack of insight and sensitivity is painful to see in print.

Blessings,

Kim Forester

Sent by Kim Forester | 12:29 PM ET | 05-30-2008

One of best contributions to new diagnosties, other than the offer to call and ask for help at any time or hour from me or any friend for the needs that they have, is to try to get them the means to read your ongoing blog. Your blog has meant a great deal to me, each step of the way with the last two breast outbursts. I wish it had been available when my husband went through,first melonoma of the eye and then the cancer of the lungs which claimed him. I was told that the insistance of walking each day, even if it was only sometimes a couple of blocks, prolonged his life at least another six months. Your book would be wonderful but the ongoing blog is priceless!. What a contribution you have made!

Sent by Lucy | 12:33 PM ET | 05-30-2008

Dear Leroy,
Like Anna getting too much information at once was overwhelming. I would do some research and then have to digest it and control the panic before I could move on. The first two times I had cancer (1961 and 1986) I had surgery, recovered and went on with my life. The first time I had to have chemo in 1991 I was very upset when I was told without chemo I had a 100% chance of recurrence. Everyone I knew who had chemo had died. My neighbor called and I told her what I was feeling. She said don't be silly. My mom had chemo seventeen years ago and she is alive and well. That gave me hope.
In more recent years the ACOR lists have been a big help to me. I also have done a lot of research on the internet but I am careful to go to reliable sources, not the quack sites.
It would be wonderful if a book could be produced from your writings!
Thanks for sharing your life and experience with us. You are a talented and special man.
I send wishes for a great weekend for you and Laurie.
Charlotte in Rural Ridge, PA

Sent by Charlotte Kewish | 12:46 PM ET | 05-30-2008

Here's a PS to my previous post. It's a quote by Henri Nouwen that I think will speak to all of us:

"When we honestly ask ourselves which persons in our lives mean the most to us, we often find that it is those who, instead of giving advice, solutions, or cures, have chosen rather to share our pain and touch our wounds with a warm and tender hand. The friend who can be silent with us in a moment of despair or confusion, who can stay with us in an hour of grief and bereavement, who can tolerate not knowing, not curing, not healing and face with us the reality of our powerlessness, that is a friend who cares." - Out of Solitude

Sent by Kim Forester | 12:50 PM ET | 05-30-2008

My advice: Have fun with your wigs and hats! It's sort of a lemons into lemonade kind of thing.

Sent by Marilyn Trujillo | 1:58 PM ET | 05-30-2008

Leroy, find your group and sign up ... real people with real questions, real experiences, and most of all, real truthfulness, compassion, and understanding ... they have either walked our walk or walking right now. http://listserv.acor.org/archives/

Caring thoughts to you all.

caring thoughts to you all,
dg

Sent by Donna, Ojai, CA | 2:09 PM ET | 05-30-2008

Leroy,
Am I missing something? You sure dont sound down to me, just reflective. I do not agree with Ileana. The information from the librarian is right on!

Sent by Anne Burke | 2:16 PM ET | 05-30-2008

At first, it felt like I was on information overload and in all the fear and panic it is hard to know what I needed... mostly love and support. Then there was information no one told me... like that I would be permanently numb in some places and temporarily numb in others... from surgery, that reconstruction would be painful. It was especially a lack of pre-operative information which caused me to actually do damage to myself. Determined not to be squashed by all that was happening, I overdid it, blew open my internal sutures, hemmorraged, required an emergency surgery, and went home VERY anemic, which set me back even further. From then on, my best resources were friends who had had been through it. Until that point, my own need to retain control (and some denial) kept me from seeking outside support.

Sent by Joan | 2:22 PM ET | 05-30-2008

Good Afternoon Leroy, Laurie and All,

Leroy, I hope you will continue your daily posts on your blog as your writings have been such a source of comfort to me on my journey through Cancer World. Your have been honest in your descriptons of your experiences, both good and bad and that has been the best help of all. I think that encouraging the newly diagnosed to just ask their questions in the current blog foremat is adequate. Then both you and your bloggers can answer with their own experiences while giving support at the same time.

Laurie, With your writing abilities, I'm sure that you would be a valuable asset to help Leroy with any required research to help answer questions of the newly diagnosed or supply referral sources.

To All, As we share our experiences and give support to each other, we make this journey more meaningful to everyone. Together we will move forward and thanks to Leroy and his support staff and NPR we know that we are not alone. God Bless!!

Eileen Pruyne
Charlotte, NC

Sent by Eileen Pruyne | 2:27 PM ET | 05-30-2008

Call a navigator at the American Cancer Society 800-ACS-2345, they have tons of information and can help you navigate the minefields. Lodging, transportation, support groups they know it all. And you can call 24/7 they are always there, and wonderfully helpful.

Sent by Elizabeth | 2:30 PM ET | 05-30-2008

I received information yesterday that my sister-inlaw is facing surgery next week and chemo and radiation for the next 5 months for recurrent endometrial cancer which may have spread to her intestines and lungs. I have been in remission since January for non-hodgkins lymphoma that was diagnosed 2 years ago. I have been trying to decide how to help my sister-inlaw but since our cancers and treatments are so diverse I'm not sure how. The Leukemia & Lymphoma Society website helped me enormously, especially the discussion boards so I will encourage her to find an online and/or a face to face support group. I just recently found this blog and I will recommend it as well. I want to tell her that it took me a long time to understand my disease and too much information would have been overwhelming, I needed it in small doses to comprehend. I did not have surgery or radiation but I had lots of chemo so maybe I can help her with the side effects. Just having someone to understand when you feel miserable I hope will help. This has thrown me for a loop, cancer is the scourge of humanity!

Sent by Candy | 2:50 PM ET | 05-30-2008

THANK YOU Leroy for bringing this up. This is a GREAT subject. When my son was first diagnosed with liver cancer (he was 18 months), I didn't hear a word the doctor told me. All I felt was devastation and hopelessness. But the best thing the doctor did was put all the information in a binder. The information included contacts for support groups, details about the disease, name of the drugs, side effects of the drugs, treatment plan and calender, explanations on what all the tests and results mean, etc. The binder was a great help once I calm down and had some logic in me to do some research and at least have some knowledge of what to expect. I agree with Anna, too much information at once is very overwhelming. I, too, had to learn as I go. I also made copies of the binders for family members who had questions.

Although one may not be thinking about taxes, it is important to remember if you have a high deductible insurance, keep track of all your copays, mileage to treatment and appointments, out of pocket drug costs, etc. All these are tax deductible if they exceed the threshold. When you have a huge medical bill, every little tax refund helps.

Sent by grace | 3:13 PM ET | 05-30-2008

Leroy - I think you need to turn this blog into a book so more people can have access to what your life and everyone else's life who has been effected by cancer have gone through. That would be a way to help others just facing the disease or one's that have it and then they would know that they are not alone.....
p.s. I know it would make it on a best sellers list!!!!

Sent by Joan Beth Smith | 3:17 PM ET | 05-30-2008

Leroy,

All of us here have experience/resources of one sort or another. I suggest that anyone who has a question about cancer/death/dying post it here and whoever has a good answer can respond.

Blessings.

Sent by Diana Kitch | 3:40 PM ET | 05-30-2008

There are a series of books called "The Girlfriends' Guide. . ." There is one on pregnancy, the first year after the baby is born, toddlers, and I think there is one on birthday parties. They are funny and, especially the pregnancy one, tell you the real scoop on what happens. I wonder if someone could write something similar for those struggling with cancer treatment or diagnosis.

Sent by Kathy | 3:48 PM ET | 05-30-2008

Your blog is a lifeline to remind us that we're not going through this experience alone - even though it often feels that way. There's always someone else with a story far worse than our own that helps us keep things in perspective.

When my husband was first diagnosed with multiple myeloma, I found support on the internet through www.acor.org. They offer individual lists for a wide variety of cancers. That way you can communicate directly with patients and caregivers all over the world who are dealing with the same type of cancer with similar issues and treatments. My husband was critically ill for several months upon diagnosis and those list members were there to answer the many questions that came to me in the middle of the night. What a tremendous lifeline. Now that he has responded to treatment, I'm able to repay that debt by helping the newbies that come to our list with all of those same questions and fears. Pay it forward.

www.caringbridge.org/visit/vernwest

Sent by Dianne in Nevada | 3:50 PM ET | 05-30-2008

My brother found out he had the same cancer as you, The same time you had cancer. He has gone threw everything you have except he didn't have the surgery on his spine. he did have cancer on on his spine, but they used rad. his cancer also went to his lungs and brain,He's 46 yrs old never smoked,HIs was caused by acid reflex .Now they are letting him rest from everything for a while,His head started hurting today really bad,and he has no energy, I really tahnk you for your blog. It is helping me to understand what he's going threw with. I live in Wv and he lives in Fla. I've been making lots of trips to Fla.I also have my mother she is bedridden and she is a handfull. I really thank you and you should write a book,you tell it like it is. Thanks again and keep my brother Tim in all your prayers, and I'll keep you in mine.Have a Blessed day. Connie

Sent by Connie | 4:20 PM ET | 05-30-2008

Thanks for all this input.

Sent by graphic design | 4:35 PM ET | 05-30-2008

I COMPLETELY agree with Brenda's response to Ileana.

In addition, why should anyone feel better at the thought that others have it worse, unless they care only about themselves. Besides, Senator Kennedy is at least 25 years older than Leroy, and Patrick Swayze is about 55. If I remember correctly, Leroy is only 52. So the comment about Leroy being more fortunate than those two didn't make sense anyway.

Your blog is always great Leroy. I look forward to hearing from you on Monday.

Sent by Teresa from Missouri | 4:48 PM ET | 05-30-2008

Hi Leroy,

I hope that I'm not misinterpreting today's blog because I in no way detect that you are down, you sound like you are back doing what you love to do.

I do agree that every one and every type of cancer and every treatment is different in some way. So how do we help? In my wife's case it would have been hard to find anyone with first hand knowledge of Merkel Cell Carcinoma. We belong to a large HMO and in 20 years of records they had only 12 cases of MCC. Her dermatologist suggested that we go to the internet for information while we waited for the first appointment with an oncologist. The "average stats" were very scary but we did get some good information about MOHS surgery and were able to find the one surgeon at our HMO who specialized in MOHS. I don't think that anyone reading this blog could have given us any useful info and may have made things worse.

I, on the other hand, have the more common stage IV colon cancer. My two day trip from a bowel obstruction to the ER then to a colonoscopy and then to surgery didn't leave time to ask many questions or even think about the implications of what was going on. It was after the surgery that someone came to help. A co-worker who had moved off to a different facility years ago showed up at my room just as I was starting to become aware of my surroundings. He explained that he had been diagnosed with stage IV colon cancer four years ago, had one lobe of his liver removed and had just finished his second round of chemo. He continued to feed me information by phone, e-mails and visits. He understood the type of chemo I was going to get and even knew my oncologist and all the nurses in the chemo clinic. His advice and "heads-ups" were a great help. I don't think someone without his experience would have been much help.

I guess if you can find a support group for your type of cancer, that's the place to go. If you know someone who has your type of cancer, that's an even better source of info. The internet can be a good source but you have to be careful. Blogs like this are a great source of information for cancer in general, we all have some things in common. If you do have a good source of information on your type of cancer let us all know.

Sent by Walt from Los Angeles | 4:49 PM ET | 05-30-2008

Hi Leroy,
This is a great question/topic. When I was diagnosed with breast cancer 2.5 years ago, I read every book and internet site I could. They were all very helpful, but nothing, and I mean NOTHING, helped me like other women going through (or already through) the same thing. I found these wonderful sisters on the Susan G. Komen message board and they talk about everything - what to expect from chemo, what to ask your doctors, what clothes to take to the hospital for surgery, options for reconstruction, etc. I've also had the opportunity to meet some of the women and become friends with them. I wasn't interested in a group therapy type of approach - the message board worked perfectly for me. I don't know if all types of cancer have such a vehicle, but they should!

Enjoy your weekend!

Sent by Laurie | 5:21 PM ET | 05-30-2008

Dear Leroy,
I'm a psychologist and I just wrote a paper about the experience of diagnosis and treatment--I talked about trauma, transience, resilience and the nature of the relationship created between the physician and patient, focusing on the ways the patient influences the doc on a nonverbal level. I presented it as part of a panel--an oncologist, a nurse-practioner and another psychologist were on the panel. The audience consisted of patients, physicians and psychologists. Although it was written in the third person it contained alot of my ideas about how to navigate and personalize a basically impersonal situation. I was completely obsessed with it for awhile--until I realized it really was an effort to give something back by providing a little bit of structure in the midst of the hurricane that is cancer. Salee

Sent by sajenkins | 7:44 PM ET | 05-30-2008

Other posters are correct. There is NOTHING like meeting fellow patients who have your particular type (and sub-type) of cancer.

I have a rare cancer, chronic lymphocytic leukemia. I was frustrated because no one I knew had CLL. I saw that in large cities, there were CLL patient's meetings. My town was too small and too far away to allow me to attend. So I started my own group!

It was amazing. We had over 20 people in my area show up. We spent three hours just chatting and getting to know one another, and sharing our stories.

We are still going some three years later. The toughest part is when one of our members passes away, because you know them. But we share what no one else can; our common cancer.

That has been very valuable to me, and I hope to others in our group.

Sent by Scott S. | 8:26 PM ET | 05-30-2008

It would be a great idea to put together a book of the practical hard won tips by cancer patients.

My friend found chemo school equally worthless. The word "nausea" was never used.

Sent by Mary Eisenfeld | 10:23 PM ET | 05-30-2008

Leroy,
Thank you. I feel as if you have been with me through my surgery, chemo & radiation. I've been with you in spirit through your treatments. Reading your blog has helped me feel less alone on the cancer side of the looking glass, that is so valuable. Thank you for your candor, your postings in my in-box are a gift. Wishing you a peaceful nights rest and sunshine tomorrow.

Sent by Debra in New Hampshire | 10:39 PM ET | 05-30-2008

When my husband was diagnosed with, then treated for, prostate cancer 9 years ago, we both had many questions that were only answered by experience. After that, a group called "Man to Man" was started in Stillwater, OK - I don't know whether it was a local chapter of a national organization, but it was supposed to be a support group for men (and their women) who had recently received a diagnosis and/or treatment for prostate cancer. I went with my husband to the first meeting, since I'd had so many questions as well, hoping to help other women. However, after the first meeting, he wasn't comfortable with me going along - he said there was too much talk about the side-effects of treatment, and not enough about the actual treatment itself. I thought it was a brilliant idea, and had hoped it could develop into something more helpful. However, David stopped going, and I lost touch with the group.

I had thyroid cancer 2 years ago, and again had many questions, to which only the surgeon had some answers - the other doctors I saw were too busy to take the time. I'd have loved to have someone to just pick up the phone (or e-mail) and ask a random question as it occurred to me - both before and after the surgery and subsequent radiation treatment - and even now, as I deal with side-effects of medication. I don't need a medical professional, just a somewhat informed friend who's been there and done that. However, as a poster before me mentioned, we have to be careful of the horror stories and try to keep the answers helpful and positive, if at all possible.

I think the question might be: How could we go about starting a local, regional or national network of "friends" without putting all our personal information out there for the weirdos and the criminal element? In the Internet Age this might be an obsolete suggestion, but I still prefer a live voice at the other end of the line - something more personal than a chatroom or a bulletin board.

Your idea of getting something started is a very good one, and I hope it leads to something.

I've been reading your blog for a long time now, and it's been an inspiration to me - keep fighting the good fight!

Sent by Fran | 12:20 AM ET | 05-31-2008

How can you help? Make me laugh. Listen and know what I'm talking about. Find a way to teach me medical speak. I was diagnosed with a locally advanced breast cancer in April and went from being a healthy active woman to a cancer patient. I felt as if I'd been unwittingly baptized at the first appointment with the oncologist when she handed me an enormous binder that said "Cancer Treatment" and told me to carry it with me to all of my next appointments. Suddenly I was being told I was going to get chemotherapy, surgery, radiation and hormone therapy, the treatments didn't promise a cure, and I was to carry my brand with me in the form of that binder until at least my hair fell out. Going through those medical appointments was like visiting a foreign country - I had no idea of the language, the customs, the practices. I'd bring lots of questions on paper and then find out there were other questions I hadn't known to ask because I had no idea what would happen.I'm not afraid of the cancer and not really afraid of dying. I'd been through several of my mother's bouts of cancer and was with her when she died. What I've been afraid of is the treatments I'm having for cancer. I'm afraid of the doctors not hearing me when I speak, of not knowing enough of their language to make them be present with me.
The loveliest people in my life were those who introduced themselves via email through mutual friends and gave me the hope of surviving the treatments. They were the ones who made me laugh, who empathized with my fear of the chemo, and who talked about their interactions with doctors. What helped me today is your blog - I started reading it at the insistence of one of my loving new email friends and you talked about this journey of cancer which is what this feels like.

Sent by Tess | 12:56 AM ET | 05-31-2008

I can relate to what Kristine said about paying it forward. I was very scared when I was first diagnosed with breast cancer, because my Mother died from it. The internet was a great resource. I learned how to read the pathology reports, and all about radiation, and options available to me. But the best resource was Jenni. A friend of my niece who was diagnosed three months before me with a stage 1 diagnosis. She walked me through the whole mastectomy/reconstruction process before I went in the hospital. Although she wasn't always truthful about how much pain was going to be involve, she was always there to support me.
Then last week at church someone introduced me to a woman who had recently been diagnosed and was scheduled for a mastectomy the next day. I went to the hospital to visit her and talked to her about what might happen next. I gave her the name of a good Oncologist and told her to call me anytime.
I think that is the best thing that has happened to me through all of this. The gift of being able to help someone else.

Leroy, that is what you do for all of us everyday. I have been reading this blog since you were on TV. I hope to keep reading it for a long while. I always keep you in my prayers.

Sent by Karen | 1:06 AM ET | 05-31-2008

Too many blame the cancer patient for their illness - I even see it here in the posts. I'm well aware that it isn't meant that way - but often, when someone is down - they hear and read between the lines. The subtle "it's your own fault", if only you'd not done this in life, not been exposed to that chemical - believed in God more...... all is perceived as subtle innuendos that the cancer patient deserved it. Maybe to others, they feel if they don't do "X" they aren't to blame so won't get cancer. It's like saying a woman "might not" have been raped if her skirt hadn't been so short, or her jeans quite so tight - while at the same time saying it's no ones fault.

Bitter - no, depressed not really, but just reading many of the posts here got me to wondering. Blame the cigarrete, blame the lifestyle, blame this/blame that, not enough this/not enough that - it all comes back to the cancer victim being at fault somehow.

For the new cancer diagnosed person, I say....... IT IS NOT YOUR FAULT! Make sure they hear this frequently, daily, multiple times a day. Don't slide those other subtle hints in there - no more "well if you stay away from this/that or the other you might be able to fight it more." If I sound harsh - I mean to. What we have is a harsh disease, harsh mentally, harsh emotionally, harsh physically.

Research, research and bug your doctors for more information so you can research some more. Take command of your choices. And yes - even those with rare brain cancers like me do have choices. I feel so sad for Senator Kennedy, for he is about to find out how little research is done on brain cancer. Notice the talk went instantly to "quality of life"?

Learn to enjoy life while you have it. ^_^

Sent by Linda | 5:35 AM ET | 05-31-2008

Leroy, although I enjoyed yesterday's messages, I feel that we had better be careful getting into this "slipppery slope" . Our relationship and comments here on your "My Cancer" has dealt mostly with your experiences, thoughts, and emotions as you have traveled this hard, painful journey. I enjoy adding my thoughts and experiences to the mix and have gained through this inter-play of thoughts. Some folks however, tend to feel qualified to give advice which could steer someone off in the wrong direction. We must be very careful with our words, but then being the writer that you are Leroy, I feel that you know this already and have some sort of undercover agender that you are toying with. Food for thought though. Thank you and have a great weekend.

Sent by J C R | 7:53 AM ET | 05-31-2008

Hi:
Exercise has saved my partner's life. He was diagnosed with Stage 4 Pancreatic Cancer which had spread to his liver, in Feb 2006. The only treatment option was chemo. Slowly he started going for walks everyday. He was 74 at the time and had a long history of biking, running and walking long distances. Now 2 years later he is still getting chemo every 3 weeks, but he is well enough to walk 5 miles twice a day. His doctor is amazed, but I am not. Exercise made the difference.

Sent by Jacqueline Roose | 8:10 AM ET | 05-31-2008

Hey Leroy,
What a good idea! The problem though, is that every person's cancer is different. As a woman in my 40s I had a cancer (mucinous adenocarcinoma [aka "jelly belly"] of the appendix) which more commonly affects men in their 50s. I couldn't find a support group, and didn't think I'd fit in even if I did. My big concerns were protecting my pre-teen sons from scary information. The info I did find didn't seem to apply to my situation.
Making the match between experienced survivor and newly diagnosed is the hitch. How can we get past that?
Keep up the good fight Leroy!
XOXO

Sent by Katie | 8:33 AM ET | 05-31-2008

When my husband was diagnosed with colon cancer in 2004 my sister sent me
"Everyone's Guide to Cancer Therapy" by Ko, Dollinger and Rosenbaum. I recently bought the new Fifth Edition. It's a great place to start with general articles about aspects of cancer, and then disease-specific. It helped us cross check what our doctor was telling us and reassured us that the treatment she proposed was appropriate.

Both of us go to all his appointments, we write our questions in advance, we carry our note pad and pen. Afterwards I write up the notes [I send them out to our close family members] and keep everything on file. He monitors all his test results closely and we ask a LOT of questions.

I just discovered Scott Hamilton's site where they have aggregated information about all the chemo drugs, a standard format, and the most complete information I've seen about side effects and how to treat them.

http://www.chemocare.com/

I haven't found much for caregivers. Our emotional journey is so challenging.

Sent by Sara | 9:41 AM ET | 05-31-2008

I don't have cancer. But I was recently hospitalized with an injury, and I'd like to add to the comments. Leroy & others who've been through this have so much experience with the medical world. What can you recommend to people who find themselves hospitalized with injury or illness? How can we best advocate for ourselves as patients? Obviously conditions vary so greatly, that it's difficult to write a series of "one size fits all" questions. But can you get close? The ideal thing would be to have a spouse who is a physician, who can take off work and be with the patient in the hospital 24-7, to act as his/her advocate. But since few of us have that, what's the next best thing? Then, what's the next NEXT best thing? And for those who truly have no one to be with them at the hospital, what do you suggest? Example of how things can go wrong: I broke a leg badly and was rushed by ambulance to a hospital, where I spent hours in ER getting various things done, then checked in to the hospital for surgery the next day. Because I became SO anxious (i'm sort of a big chicken & quite averse to medical intervention) in the hours before surgery, I was given a couple of Ativan that really snookered me. I remember going into surgery, being asked to make a decision about anesthesia (general? local? which do you prefer, and why?), I remember explaining about an adverse reaction I had to anesthetics years ago (causing me to "crash") but I was so doped up from the Ativan...it's all a blur. My 18 year old daughter was with me, but she was frightened and... well... young. Fortunately I was in good hands and it all went well. But it's scary to think I was making a major medical decision...high as a kite! Yet, I can understand why they gave me those two, white pills when I was starting to freak out. Those of you who have lots of hospital experience (and are generous enough to offer!) could perhaps create a sort of patient advocate wiki-style website? I know we would love your wisdom. And bless you, Leroy, for asking. Ditto to all the other wonderful folks who contribute to this comment section. Hi Leroy, it's me-Rebecca (Al Corral's sister) sending love and gratitude from the Bay Area.

Sent by Rebecca Corral | 9:37 PM ET | 05-31-2008

I started reading your blog about a year ago after losing my mom to ovarian cancer. It helped me to understand more and more of what she went through. It was super hard some days and made me cry more than once. Three months ago I was diagnosed with melanoma (found it really early) and just yesterday with breast cancer. I'm young with two babies and scared shitless. So thanks for this blog and all the support it lends.

Sent by meghan | 9:57 PM ET | 05-31-2008

Dear Ileana,
With all due respect, I think you should either change your therapist or your medication ( if you happen to be taking any ) Your comments on dear Leroy are so totally offensive to me. Maybe an examination with an ophthalmologist might also help open your eyes and allow you to see what this man has accomplished. Evidently you must have been reading the wrong blog.

Prayers to all. Sorry guys, having a bad day and had to vent.

Sent by sasha321 | 12:35 PM ET | 06-01-2008

Hello Leroy,
When my husband was diagnosed with not just one type of cancer but two different forms within a six month period (Lymphoma and Pap. Thyroid Carcinoma) we were immediately overwhelmed with information. It was too much too soon. Now looking back over the last three years of treatments the things that we wish we were told had little to do with statistics, and treatment combinations. What we really needed to hear was everything that they don't tell you. Like, even of you beat your cancer it will always linger in the back of your mind, and people will always treat you like your fragile and can break at any moment. My husband was just 28 when diagnosed, I was 27.Our Kids were just 4 and 8. There is so much improvement in the original dialog that needs to occur. I think that my husband and I both agree that if we had to share this experience with a new cancer club member we would start the conversation by saying: It is ok to be afraid, and that there are going to be changes not only in the near future to your life, but in the months and years to come. You are now part of an elite community, and the membership is lifetime. Talk often to those within this community, and ask the difficult questions, and be ready for answers that you may not want to hear. We are so blessed to have a place like this to share our story. To all of our community friends, we are sending thoughts, prayers, and hope for the future. Remember you may have cancer, but caner does not have you!

Sent by Shawna Gunter | 9:38 PM ET | 06-01-2008

From: Marion Welp [mailto:robmar1@cox.net]
Sent: Monday, June 09, 2008 12:04 PM
To: NewsLetters
Subject: LeRoy Sievers

Dear LeRoy:

Your letter to us all, today, June 9th, 2008, made us very, very sad; you are indeed a valiant soul, and have given the will to keep fighting with courage to countless cancer patients, cancer survivors and those (like myself) who have not personally had this disease, but have suffered with and lost many family members and friends.

We will be praying for you and want you to know that the effort you are making to continue writing, even on days when you must feel like just pulling the blanket up and forgetting the world, are so appreciated and respected. Thank you, and thank you again.

Sincerely,

And May God bless you and keep you peacefully and with a minimum of discomfort in these coming weeks/months.

Sent by Marion Welp | 4:40 PM ET | 06-12-2008