Sounds good to me Leroy!

I agree completely, as I said yesterday, simply making some sort of decision and taking some sort of action can be significant stress relief!

Remember... "plans" are NOT static... they adapt and change as necessary.. remember... in any fight to bob and weave! LOL

I am so glad you are indeed looking forward and moving in some direction! Just sitting and waiting is NOT a good thing!!!

Keep moving Leroy!

~Ron

Sent by Ronald K. Bye | 7:17 AM ET | 06-21-2007

Leroy,

I cried when I discovered your blog and the other posters. My wife Jodi lost her battle with skin colored (rare) metastatic melanoma just 3 months ago. She was diagnosed end of October of last year. She was stage iv at diagnosis, multiple cancers in the spine, pelvis, most of her major bones, base of her lungs, liver and in the brain and skull. We were just devastated. The CT technicians were near tears when the contrast CT finally revealed the tumors. Within one month after official diagnosis end of October, 2007, she became paralyzed from the waist down due to the spinal and pelvic tumors, then in hospice with less than six months prognosis. All through this the pain was getting so much worse, even with morphine.

She had spine radiation, failed, made her worse, spine pain was so bad she could not have head radiation. With brain metastases and lack of function, there were neither clinical trials nor using interferon or interleukin II, as these immune treatments swell the brain tumors with severe effects, before any improvement, requiring heavy steroids that largely defeat their anticancer effect, steroids Jodi could not tolerate anyway. She got Temodar, chemo for melanoma, but it has a abysmal response record. The chemo was brutal on her. She was dying from the skull/brain tumors, with irregular breathing. It broke our hearts to watch her go through all this. She was too sick and paralyzed to take regular treatments any longer, dying, so we felt guided to do alternative CAM treatments, what else was there left? We chose one after a lot of prayer.

The next day after the first treatment Jodi was comatose, arms now mostly paralyzed and barely breathing, almost died. Then she rallied. Her breathing was restored and the other neuro problems slowly resolved. The combination of the Temodar, then CAM and a miracle likely caused remission of the head cancers. But her severe pain and cancer growth in spine, chest and abdomen kept on, causing a very large tumor burden. This CAM did little to help those tumors.

In a detailed, researched CAM book by a Dr. Blayloc (sp) it kept listing curcumin extract, a part of the spice turmeric, found at all health food stores very reasonable. It said it hammers cancer with nearly a dozen chemical blockades, it works on resistant cancers, improves immunity, greatly increases effectiveness of radiation and most chemos (except those for breast cancer, use it before, then after chemo). My Internet research revealed top cancer center MD Anderson is so impressed with curcumin they are doing very intensive research with it. They even have a dose regimen posted!

Jodi had immediate response less than three weeks with very mild side effects. Energy was up, paralysis improved some (unheard of). Her clouded urine due to cancer waste products seen since before her diagnosis-became clear, IMO showing that the cancer was being hammered. However, pain was much worse. We continued the curcumin despite the pain. But then she began having brain symptoms, vomiting, liver failure symptoms, likely due to the brain and liver mets swelling and inflamed, (she had a huge tumor burden, tumors swelled and hurt after each treatment). We had to cut it way back, could not use steroids. But, soon after this high dose, then low dose, her cancer pain went to near nothing and she got off most of the morphine!! She tragically still died from tumor burden, liver, internal bleeding and little food eaten weeks later, virtually pain free the whole time, able to respond some almost to the end. We think she had way too much tumor burden, the terrible brain and liver mets, just was too weak to take the treatment well. We feel it was working when all else was long exhausted. The tumors did not shrink, but seemed far more indolent, much less invasive and aggressive than before cucumin. I now take it as I believe it can prevent cancer, and make any appearing in me more treatable, and if I become terminal, far less pain and suffering and maybe longer life. My daughter and son deserve hope that their dad will not be struck down with the Beast.

IMO, a cancer patient with small tumor burden (or debulked), none yet in the brain or liver, can benefit from this CAM treatment, such as you, Leroy and likely other posters. Actually, IMO it is not really CAM as MD Anderson and other major researchers are testing it. At least it offers hope of a superior palliative pain control and as an adjunct could really help knock out tumors with the usual radiation/chemo. People have taken many grams of it with no adverse problems except those with ulcers or liver disease. My two cents worth, it just is so painful to see you and the others struggle with the Beast, fear of pain and suffering.

Steve

Sent by Steve Faulkner | 7:21 AM ET | 06-21-2007

i think about my plan, what did i do when i was faced with my first decisions on how to treat/cure/attack this disease.
I remember having this visual of me standing on a cliff, and saying..."right, here it is, the decision to jump or turn around and face the challenge", i have wrestled with major depression most of my life and some days i prayed for some disease to take me away, so i wouldnt have to do it myself, take my life, but when the day came, and i'm not saying i asked for this, ...i chose to fight, i'm still amazed that i chose to. I am surprised every morning when i wake up and think i'm still here, i'm still fighting this. I'm not saying there are days i wish i had jumped, but its interesting how our plans for treatment or our life change, ebb and flow, every day.

Sent by Jenn | 7:56 AM ET | 06-21-2007

Dear Leroy, I agree that having a plan is comforting - you can always revise a plan. Just knowing there is something to do helps so much. I will investigate my choices once the Dr. gives me results and make my plan and then feel at least I have a direction. Thank you so much for sharing with us here in cancer world - it means so very much.

Sent by Vicki (FL) | 7:56 AM ET | 06-21-2007

Leroy - for me having a plan and making the decisions regarding it, gave me some sense of control, perhaps a false sense, but nevertheless.........
Everyone around me that knows me so well - would actually kind of laugh when I would reiterate "the plan" over and over....as much as anything, so I could get my arms around what had happened and how much my life has been changed.....
I learned the plan was really just a path I selected to walk, and there were many bends, turns and bumps and I had to naviagate them all - and I kept revising "the plan" in my head........
Now, I'm almost at the end of "the plan" and I have to come up with a new one to "get back to normal life".......what's so funny is that nothing is different today than three months ago, or three months from now.........
We all have to walk the path and go on the journey and we have no idea what joys and sorrows lie ahead - just as we have no idea what will go right or wrong with our treatment plans...so, we move forward with all the people who love us by our side and do the best we can........
I know you'll make the right choices and form the right plan for you...and you'll handle all the changes in the plan as best you can!!
All Shall Be Well!

Sent by Ruth Chermok | 8:33 AM ET | 06-21-2007

Right on, Leroy! A plan is essential to life. It implys and fuels a fight worth fighting and Hope for a future. There will be ups and downs but doing nothing is not an option, certainly not at this point.

My husband and I were developing new plans with his doctors, in response to new conditions, all through his bout with pancreatic cancer. In between these times, we had periods of welcome stability.

I feel energized just reading your post this morning. Best Wishes. I really hope you'll get that Novalis treatment!

Sent by Marilyn | 8:39 AM ET | 06-21-2007

Above and beyond the wonderful blog itself, this site presents the profound thoughts of many people, and builds a support community that is unparalleled. Thank you to so many who have written in with stories, ideas, encouragement. Thank you Leroy for starting this living document. It is helping me so much in my own cancer journey.

Sent by wendy | 9:02 AM ET | 06-21-2007

Dear Leroy, I've been following your blog ever since I discovered the Living with Cancer show a few weeks back. I'm a breast cancer survivor. I do agree with other writers that having and executing upon a plan is good. In the midst of my fight, I recall my usual response to other people who would come in and look at me in my office and tell me how incredibly courageous I was being, was this, and I believe it in my core: None of us chooses what might "happen" to us - but what we do choose is how we react to it. I only know of two ways to react to cancer - you give up, or you fight. And in the midst of my fight, I discovered a part of me I didn't know I had - that those trials introduced me to my strengths. Other people were watching me - I don't know, sort of as a role model. It's what I do anyway - watch how other people deal with tough stuff, so that if/when it happens to me, I will have seen how someone else did it. I find you extraordinarily insightful and courageous.

I wish you the best in your upcoming challenges.

Sent by Martha | 9:02 AM ET | 06-21-2007

Leroy; This is a little off topic but thought you might enjoy the story. My community just finished it's "Relay for Life" program for the American Cancer Society. Candle lit decorated bags are placed on the sidewalk around our local park and teams of walkers contine to walk the park through out the night. I had purchased one of the bags, placed your picture and name on it stating "In Honor of Leroy Seivers". As I walked passed it two ladies behind me said "Hey, That's the guy from the PBS Blog, I read it everyday!" So Leroy, even out here in rural small town Minnesota you are having an inpact on the lives of others touched by cancer.....Continue to fight the good fight! DG

Sent by David Grimmius | 9:02 AM ET | 06-21-2007

Dear Leroy,

I have always liked the idea of having a plan, as it provides some measure of control. Given the chaos that cancer wreaks, this is a good thing. Plus, you can modify it as needed.

Steve, thank you for sharing your experience. Please accept my condolences on the loss of your wife. One of the gifts of this blog is that we learn from and help one another. The sharing is very special.

You are all in my thoughts and prayers.

Erica

Sent by Erica | 9:15 AM ET | 06-21-2007

Leroy~
I sure do hope you are a candidate for this specific radiation treatment. It's funny when you talked about your sr. producer asking if you had a plan, it reminded me of my last job where my boss taught me in my line of work to always have a plan and keep plans A, B, & C in your back pocket. It worked well when my 'plan' did not go as planned.

As you have said, nothing is certain with cancer, so how does one devise a plan in uncharted territory? I have learned to research instead of 'giving in,' because I felt hopeless and helpless when first diagnosed. I remember the docs would ask me, 'so what do you want to do?' I thought to myself, 'ummm what is wrong here, that is why I came here.' Don't get me wrong I have the best team of docs. Now that I have learned~ correction, now that I am learning, how to navigate life with cancer, I get it, we have options. I like that now. Knowledge is power so I filled my brain with about as much as it can hold now ~ brain capacity is a tad limited now due to chemo, I just write things down more.

Okkk I feel I am rambling now...At least I still have some insight :)
I'm glad I found your blog. I was given a video of the Discovery special, "Living with Cancer" and I could relate to you, your perspective, your honesty, and, of course, your humor, the most. I have to have humor through this, it gets me through sometimes, most times. So, thank you, Leroy. And, keep on keepin'on. Alright, I'm not 16, keep doing the great work you do!

Sent by Lisa | 9:21 AM ET | 06-21-2007

I'm reminded of a T V show my boys watched in the last 70' or 8o's. The show was called "The A Team" I can't remember the name of the character but he would say " I just love it when a plan comes together".
Thoughts and Prayers to you Leroy, remember God has a purpose and a PLAN for us all.

God Bless us all in this journey.

Sent by Sandy ^j^ | 9:26 AM ET | 06-21-2007

I'm with you! Get a plan and work the plan (modify, change, redirect, etc.)and get another plan if this one doesn't seem to work.

However with this said, I have watched friends and acquaintances develop an End of Life Plan. They had fought so diligently and for so long but nothing seemed to stop or even slow the progression of their cancer. They chose to receive no additional treatment except for pain management. They chose to say their good-byes to family and friends and they were ok with their choice. Some may say that this is not a Plan! I believe differently - it was their Plan for their eventual death on their terms! With each was a calm and a peace and that it was ok to go.

We all need different types of Plans based upon where we are on our respective journeys with cancer.

Today, Leroy, fight as hard as you can for as long as you can with as many Plans as it takes to have NED visit you once again.

PS- Someone suggested yesterday that you consider making your daily blogs into a book for cancer patients and caregivers. There are books for the Newly Diagnosed, Signs and Symptoms, Treatments and Alternatives, etc. Your book, if you chose to do this, would be unique and so needed in the cancerworld. There is a book by Max Lucado, Grace for the Moment, that offers an inspirational message from the biblical perspective and verse. Your blog-book could use this format as a possible model. Hope you will consider doing a book.

Blessings and prayers as always.

Sent by Al Cato | 9:27 AM ET | 06-21-2007

I've had no evidence of disease since the removal of a lymph node on my neck January 2007. I have stage iv kidney cancer, clear cell, and it's unusual to remove cancerous lymph nodes with this diagnosis (or perhaps with any cancer that has made its way to the lymphatic system, I'm not sure). The primary tumor and more lymph nodes surrounding the kidney were removed January of '06. The node in my neck was discovered at NIH when I was headed into a vaccine trial because--I had a plan. It changed. I went through immunotherapy, and the tumor in my neck remained unchanged for 9 months. So I asked the doctor if I could have it removed. After being told I wouldn't be able to have the primary tumor removed--it was 19cm by 7cm--and then having it removed by a superb surgeon at NYU, I must admit I remain somewhat of a skeptic when I hear the word "can't."

I still have a plan. As you well know, having no evidence of disease, when you're a stage iv, isn't the same as a remission. If the cancer comes back, I've got my eye on another trial at NIH. It's a mean one, but it's the one I think is most likely to work. My family, friends and co-workers think it's weird that I a) have a plan at all, and b) would pick one with chemo when we know kidney cancer is resistant. This trial is about emptying the depository (in this case, me) and filling it back up with stronger, happier cells. Doesn't that make all the sense in the world?

Well, to me, a cancer survivor, it does. To them, the people who I care about and who care about me, it doesn't.

C'est la vie.

Thanks for your blog. It helps me through each day.

Sent by Wendy Murphey | 9:41 AM ET | 06-21-2007

I wonder about having a plan. My husband has stage iv colon cancer and has decided not to have chemo. He will be monitored by MRI every 3 months. Is this the same as a plan? A plan not to have a plan?

I like your entries, they are much like my diary and email.

Sent by Tommy McDonell | 9:52 AM ET | 06-21-2007

Dear Leroy,

Plans. Even at this point in your journey, you continue reaching out and guiding fellow human beings. Thank you, I think.

I'm at a crossroads, many possible paths going off in too many directions. I have more questions of my doctors. I need more information. I feel guilty for having more questions, needing more information.

The more I learn, the more questions I have. Post-surgery, the malignancy question will be resolved. ? But until then, I feel so torn about feeling on a gut-level that the tumor is actually malignant, and wondering what, if anything I should do about that. ?

It was strongly schooled into me, don't ask questions, don't be rude, don't offend anyone in authority, and now, I'm an adult, and I'm not sure where to draw a line.

One bottom line is that this is my life, and the life I have with my partner and our family. I struggle to speak up, be assertive, tell the story in a coherent fashion, but I've hit a wall. I need to ask my doctor some questions that I fear will make her angry or "put out" with me, I need her to hear and answer. I don't want to alienate her, and I don't want to leave myself with these questions burning a hole inside me.

In writing this I'm finding that I'm looking for your approval, permission to go ahead and ask my questions, and maybe that's my answer ... for myself.

It's my journey, and I'll just have to walk it the best I can.

Just as I have been witnessing that you are walking your journey. Thank you.

Heartlight always on for you, empathy and appreciation,

Kim B.

Sent by Kim Blankenship | 9:54 AM ET | 06-21-2007

Hi Leroy and all,

Leroy, as you point out today, it???s important to have a plan ??? and ways of not simply waiting - probably with considerable anxiety - for the next thing to happen.

As your work with this blog underlines, and my own experience as well as that of many others affirms, it???s also important, in our circumstances to have purpose and intent. The purpose you fulfill for many of us is to provide hope, companionship and support on the journey. For me your observations and those of other correspondents also provide insight and a range of experience that help me in fulfilling my own purposes.

Having purpose can help (me at any rate) deal with situations where, as I said yesterday, there appear to be only bad choices. By the way, it???s amazing to me that in three days you???ve moved from sharing that to a plan for dealing with your cancer???s current form It???s interesting too that the plan deals with the medical aspect of your cancer only.

As you???ve pointed out and we???ve all experience, I think, we are far more than our cancers or other serious diseases. Our purposes may go beyond them and their consequences as well. I believe that many of us focus (and are forced by the situation to focus) far too much on the medical aspects of our cancers and too little on the rest of our lives. These lives, influenced as they are by our diseases, can continue to be the sources of our greatest satisfactions.

For better or worse (and I am not entirely happy with this) my own potentially terminal cancer is all wrapped up with my current sense of purpose. It???s kind of like the cancer itself, which, when it returns full-blown, is likely to be well- mingled with my brain (pleasant thought!). In any case the purposes I am fulfilling appear to be:

*Sharing how, in my experience, potential terminal illness can influence the ways we look at larger issues (human rights, AIDS and AIDS orphans, global warming, senseless wars and their human and resource costs, etc.)

*Sharing how larger issues and other cultures influence how I deal with my cancer

*Insofar as possible becoming a public voice on behalf of the overall health of survivors of cancer and other deadly circumstances and strengthening that voice so that it becomes more equal to that of the medical professions, corporate interests and public stigmas and assumptions that plays such a large role in our lives. All of you provide a great deal of material for this

*Leaving a worthwhile legacy for my family, grandchildren and others

*Doing useful work that defies the limitations imposed by my disease including no driving, no regular job and no knowledge of how long I will be able to continue.

Thus far, Leroy, I have co-conspired with you in not saying much about faith. I can???t avoid it at this point. I don???t believe that, as advocated by Pastor Rick Warren, that it is necessary to live a purpose ???driven??? life. His wife Kay, by they way is a cancer survivor, who puts most of her energy and considerable influence into the situation of HIV/AIDS orphans and survivors as well as economic and faith development in Africa. Nor do I believe that one???s purposes need necessarily to come out of specifically Christian faith, though faith of some kind can be immensely helpful. So can the support of a faith community. I hope I am being purpose led rather than purpose driven and that leading has tended to come from what Christians call the Holy Spirit (and the 19th century Sioux saw as the Grandfathers).

Thanks again y???all for helping all of our lives to have purpose.

Vaya con Dios

John Shippee
Atlanta, Georgia .

Sent by John Shippee | 9:59 AM ET | 06-21-2007

Leroy: Remember there are options out there..and never ever give up hope. That is one thing that keeps people in situations afloat....

Many hugs, and warm thoughts your way.

Krupali

Sent by krupali tejura md | 10:11 AM ET | 06-21-2007

Leroy,
Thanks for this post..and this blog. I read it daily however I don't get to post every day.
Having a plan is a good thing.Even though I am stable, my next appointment and scans are not till Sept. I am sitting here researching and looking at things I can do to formulate a plan. Things I can talk to my Oncologist about that are out there.
I think knowing there are things out there options and new things coming out daily is important. Along with having hope to get over the current hurdle.
I think having a plan gives me control back and need that human beings.
My thoughts and prayes are with you Leroy

Sent by Kerry | 10:59 AM ET | 06-21-2007

Leroy,

I remember when my husband died several years ago. There wasn't anything I could do, but sitting around looking at the void his absence created was terrifying for me. I started to arbitrarily make daily schedules. I was enormously helped by still being at work. Weekends were hard. Once I got a rhythm going, it was easier. I suspect the same may be true for you. You are doing SOMETHING and that is important. How much it can help remains to be seen, but you aren't letting grass grow and that's a good thing.

Sent by Diana Kitch | 11:06 AM ET | 06-21-2007

I think the reason we all like plans for cancer so much is that they provide some kind of structure and control for something that ultimately we know we can't control. For me, there's nothing worse than aimless limbo.

I also wanted to let everyone know that my breast reconstruction surgery went really well - no complications, uneventful hospital stay, and now I'm back home where I can't lift anything greater than 5 pounds for 2 months. One thing that defintely helped get me through this surgery was the support, thoughts and prayers of all the wonderful friends from this blog. I never once felt alone, knowing that you were all out there rooting for me. Thank you again, Leroy, for giving us this forum to ask for and receive support from fellow travelers - it has made such a profound difference in my life.

Sent by Gretchen Hoag | 11:11 AM ET | 06-21-2007

Leroy,

It seems to me that you have had a plan, all along. For the most part, you choose to treat the tumors rather than the symptom. Other than the ravages of chemo, like many of us, you remain largely non-symptomatic. And, yes, the waiting game is brutal. Medicine generally has a tough time with the more aggressive approach of treating disease vs. symptoms. Eradication of disease is left to the guys in research. Fixing a symptom such as pain, nausea, bleeding, etc. is very measurable and thus more rewarding to physicians.

Bottom line, when dealing with cancer, it amounts to trying to stack rattlesnakes.

Michael Lewis
Seattle

Sent by Michael Lewis | 11:39 AM ET | 06-21-2007

Dear Leroy-

I'm glad yo have a plan. And, as others have already said- it's stabilizing and positive to have one. You're doing the right things.

Since it's my Mother that has the cancer, and not me, I can only (selfishly) think about plans in relation to myself. I can't make any plans while she's going through this. Everyone keeps telling me to take a vacation- how can I plan to do that when I could spend that time taking care of her?

I was recently accepted to graduate school and find it hard to make plans for that. I work full time so it's going to take me longer- maybe 4 years- to graduate.

I hope my Mother plans on being there when I do.

I'm glad you have a plan. I'll get one just as soon as I can too.

Sent by Elizabeth from Brooklyn | 11:52 AM ET | 06-21-2007

Hi Leroy and guess what I have no plan. I have a tumor on my bladder, I have NHL stage IV and the tumor has not responded to past treatments so now I have no plan. You are right in the assumption that it makes you a little crazy not having a plan. You want to scream at your doctors that it is unreasonable at this day and age that there is nothing that can be done. You research on the internet is futile and then the hopelessness sets in. You just don't have any expectations and decide that nothing can be done so just live and love the best you can....going without a plan is scary..mostly it is just sad.

Sent by Miriam | 11:55 AM ET | 06-21-2007

Hey Leroy,
Amen to the plan. I'm with you - I couldn't stand to just wait around for things to happen. When I was diagnosed with Hermansky-Pudlak Syndrome, finding out I was in the process of developing lung fibrosis was bad enough, but being told there were no treatments and nothing I could do was just as bad. Thank God I found Donna Appell, who had started the HPS Network 10 years before on her laundry folding table. It's thanks to her, and the rest of the HPS community, that I get to have a plan too. Because HPS is so rare, we can't count on doctors to diagnose it, or to know about our clinical trials etc. So, not only do I participate in research, but to be sure the trial can continue I actively outreach to the medical community etc. trying to find others that have HPS and don't know it.

I know the choices you're facing aren't great. But, at least there are choices to make and plans to be made. For me, the choice is easy - there's one option - and just five years ago there were none. If you end up trying something super experimental, perhaps you'll find some satisfaction, as I do, that because of the choice I got to make today, someone else will have better choices tomorrow.

Sent by Heather Kirkwood | 1:36 PM ET | 06-21-2007

My mom died of breast cancer (metastasized to the the lung, sternum, and chest wall) on May 17, 2007. In the end, when she knew she was dying, she was scared. She would say, "but I'm not ready." Dying, surrendering, crossing over...those were not part of her plans for this spring of 2007. But, alas, God's perfect plans sometimes never gel with what we think are our "perfect" plans.

Sent by Jenny Handel | 1:38 PM ET | 06-21-2007

Dear Leroy, I am so comforted by the fact that you have made a decision to move forward with a plan. I admire you. I admire your strength and courage. You are a true survivor!

I am currently going to a psychiatrist twice a month for therapy, as I have not yet fully come to accept my husband's aggressive cancer. I have been having therapy for one year now and between the therapy and this blog I think I am starting to accept that this is going to be my "new life" , although the anger, fear and sadness are still there. I know the sadness will never go away, but I have to get rid of the anger. I desperately need to be in a comfort zone. He told me that if I free myself of anger it will give me more energy to (as you say) map out a plan.

My therapist has taught me a lot. We all have to make plans that shake our foundation and leave us afraid and unhappy, but a strong mental attitude will create more miracles than any wonder drug. I truly want to believe this.

Stay strong Leroy. It is such a privilege for me to be able to correspond with you. You are always in my heart and my prayers. Sasha

Sent by sasha | 1:48 PM ET | 06-21-2007

Okay Folks, I'm glad Leroy has a plan, and for all of you who are able to make plans. What about the rest of us? Have we given up? Are we no longer fighting? I don't want to give up. I don't want to die. I really just don't seem to have any other options. I guess I don't want us to be divided into good/bad or fighter/given up camps. There is room for all of us.

Sent by Stephanie Dornbrook | 1:51 PM ET | 06-21-2007

Dear LeRoy,
I'm glad you have come up with a plan. Its hard to know what direction you are going in without some kind of plan. And I pray that the targeted radiation will work out for you.
My current plan is to wait and see how far I can get before progression. We are holding radiation in reserve.
Those of us with stage 4 uterine cancer usually survive less than a year from diagnosis. My plan is to break that record!
LeRoy, here's to plans and here's to the futures of all of us on this journey!! And thanks so much for this blog, its wonderful!!

Eileen Pruyne
Charlotte

Sent by Eileen Pruyne | 2:02 PM ET | 06-21-2007

Leroy,

Today's post was much more uplifting for me. We always should keep some hope, and having a plan hints at having hope.

Good luck as always.

Sent by Brit | 2:13 PM ET | 06-21-2007

Hi Leroy and others:

You always had a plan, you just lost your footing there for awhile. It is like you you are in this race and the Cancer creep was way behind you. You were winning and we were cheering you on. Then the creep snuck up behind you again and tagged you. You got a little behind the bully....perfect spot to be to kick butt. Do it for us, Leroy. Kick some butt and keep running the race. I think about you every day and I check the blog. If thoughts are powerful, then you've got the power to keep up with the plan!
Susan in Chicago

Sent by Susan P | 2:17 PM ET | 06-21-2007

Thank you for your thoughts...each and every day I always feel inspired by what you write and by how you write it. Being a cancer patient (I don't like the word survivor at all) has changed my life in all the usual ways and many more of the unusual. I never would have read a word that you wrote on this blog if not for my breast cancer. I don't think of that as a good news/bad news situation. I just thank you for your thoughts...every day...

Sent by Helene Weingarten | 2:25 PM ET | 06-21-2007

Dear Leroy,

You sound good. I'm glad. You're family now. To Steve: I'm so sorry about your wife. I can't imagine what you and your children are going through and I'm so sorry all of you had to watch your wife endure so much. I personally think I have the best husband in the world, and I can't imagine life without him or having to raise my children without him. Makes me cry just thinking about it. My deepest sympathies for you and your children. I do appreciate your information on the curcumin extract. I will mention that to my Mom so she can mention it to her oncologist To John: I've read "The Purpose Driven Life" several times and found it uplifting. Regarding God and faith... I've found it tested some, and then strengthened some with the continual return of my Mother's cancer and have thought long and hard about it lately. I know there is a God, and I think my route to him and the Holy Spirit is through Jesus Christ, and I accept that on faith. I am not so arrogant, though, not to wonder about other religions and their right to reach God and the Holy Spirit the way they believe. I'm positive, however, that God, however you get to him, works in mysterious and miraculous ways. Take this cancer forum, for instance. It has taken on a life of its own and provides so many people with a connection, a mutual love for Leroy and his trials and a support and sense of "These people know what I'm feeling and can really identify". Information shared here or just the encouragement to "keep up the fight-you are loved" could mean the difference in life and death for someone. That is amazing. And to another lady named Connie, who says she has cancer and lives alone.... I am thinking about you. If you ever need someone to share some thoughts and encouragement with....post your e-mail here, if that is appropriate, or ask me for mine if you read this, and I will write you. God Bless you All.

Sent by Connie E. | 2:37 PM ET | 06-21-2007

Leroy - you read my mind so well ... I could have written the last two paragraphs. I have to admit that I smiled as I read the blog. The fighter is still there. Excellent. I get scanned on Monday and am already "planning" what my options might be - either way. I hope the plan is to stay the current course! Peace.

Sent by Shaun | 2:55 PM ET | 06-21-2007

Hi Gretchen;
Isn't life wonderful, again? I remember your apprehension and concern before the operation. Hopefully, we'll be hearing good news from Leroy in the near future.
That's what's wonderful about this blog and about Support groups in general. If you're waiting and worrying about a new procedure, there's always someone who has been there, someone to help you through it. Once successfully through it, you're now ready to help the next person. It's a never ending circle of hope and friendship!
Love, Don

Sent by Don Winslow | 3:09 PM ET | 06-21-2007

Leroy, Any plan makes you feel better, if for nothing more, than they have a plan. It is difficult enough to deal with all this, you have to be able to place some confidence some where. The journey has many twists and turns, hopefully at one you will get great news! Right now, just getting the okay to move ahead with the next plan will have to suffice. Have Hope, Stan

Sent by Stan Wozniak | 3:24 PM ET | 06-21-2007

Take Time

Take time to think...
it is the source of power.
Take time to play...
it is the secret of perpetual youth.
Take time to read...
it is the fountain of wisdom.
Take time to pray...
it is the greatestpower on earth.
Take time to love and be loved...
it is a God-given privilege.
Take time to be friendly...
it is the road to happiness.
Take time to laugh...
it is the music of the soul.
Take time to give...
it is too short a day to be selfish.
Take time to work...
it is the price of success.
Take time to do charity...
it is the key to fulfillment.

Sent by Karen | 3:35 PM ET | 06-21-2007

Hi All,

Plans are extremely important, and when plans get preempted many things can happen. You may have fall back, regroup, make snap decisions, and then start all over again.

And yes, plans allow us to exercise control over our lives when there may be little else we can control. Doctors tell us when to make the next appointment, when to have the next scan, what pills to take and if we are lucky why we are taking them. So, away from the arena, while we are waiting we plan.

Plans are wonderful. My plan was to respond earlier, except.......

Thanks to all

Sent by Susan Chap | 3:35 PM ET | 06-21-2007

The clock is running. Make the most of life today.

To realize the value of ONE YEAR, ask a student who failed a grade.

To realize the value of ONE MONTH, ask a mother who gave birth to a premature baby.

To realize the value of ONE WEEK, ask the editor of a weekly newspaper.

To realize the value of ONE HOUR, ask the lovers who are waiting to meet.

To realize the value of ONE MINUTE, ask a person who missed the train.

To realize the value of ONE SECOND, ask a person who just avoided an accident.

Treasure every moment!
Yesterday is history.
Tomorrow is mystery.
Today is a gift. That's why it's called the present!

Sent by Karen | 3:39 PM ET | 06-21-2007

I had a plan.

My plan was to watch the Discovery special "Living With Cancer" with my dear husband, who was looking forward to seeing it as much as I was. Well, somehow it got taped over. Is there anybody out there who would be willing to let me borrow their copy? Email me at jordisruhl@mac.com.

Thank you!

Sent by Jordis | 4:09 PM ET | 06-21-2007

Dear Stephanie,

I think of you every day, and send prayers and hopes that maybe you do have options and will beat this yet or at least get a long reprieve. I don't divide you into anything except someone with rare class and courage who did not deserve this turn of events. God Bless you and your family.

Sent by Connie E. | 4:50 PM ET | 06-21-2007

To Kim; Educate yourself about your cancer and your questions will bring better answers. Ask any and all questions you want. If your doc doesn't like questions or can't/won't give you understandable answers you may have the wrong doctor.
To Stephanie; I can't say it better than Sarah a few days ago. I wish you clarity and peace.

Sent by Gene Koeneman | 4:50 PM ET | 06-21-2007

I was thinking the same things, Stephanie.

But my sense is that you can't get to a place where there are no options, until you have no options. And then -- even then (as I think you've reflected before), there are options about how to spend the day, the hour, the moment.

There are always choices, even when things get very narrow.

Sent by Jan | 5:04 PM ET | 06-21-2007

Here's a GREAT PLAN!!

How about everyone PLAN to attend the first of it's kind "Northeast Regional Survivorship Summit"?? :-)

http://www.canceradvocatescoalition.org

Leroy.... I would love to have you in attendance.. I know you would inspire so many to do great things.. which is the mission of the summit to begin with!

Sorry for the unabashed self promotion LOL I will understand if you do not approve for posting....

But seriously... I truly would love to have you join us!

Sent by Ronald K. Bye | 5:18 PM ET | 06-21-2007

Leroy:
I am a 47 yo woman with brain cancer. My husband had been reading your blog for a few months prior to teling me about it, for which I am very greatful. So often you put into words what I am unable to, and answer what he has thus far been unable to ask me. We had been married just 16 months when I was diagnosed, so it has been quite a journey.
There is no way to thank you for sharing your journey with all of us - nor is there any way you could possibly grasp how many people you touch, enlighten, encourage by writing each entry. I just recently told my grown son about the blog and he, too, has begun reading it to try and probe my deeepest feelings, the ones I suspect are too painful to ask me. I am open to talking to anyone about them, but I suspect it makes it all too real for my son or my husband to talk of my battle and forthcoming death who knows when.
I had radiation treatments similar to Novalis, Proton Beam, a high dose radiation treatment at Loma Linda University. It has been successful and kept what remains of the tumor from growing for 2 years at this point. Novalis, I believe is similar to Cyberknife, the latest update to Gammaknife. May you sail through it smoothly, and may God hold you in the palm of His hand as He has blessed so many of us with the gift of your writing. I will continue to keep you in my thoughts and prayers.

Sent by Betsy | 5:43 PM ET | 06-21-2007

Sometimes no plan feels like the best plan. Sometimes no plan may be the only plan. There are as many variables in these choices we have to make as there are individuals who may have to make them. If we choose to wait, it certainly doesn't mean we've given up. Maybe we prefer to try to get all we can out of life while we feel we are capable. Stephanie, you are so right. There should be no division here. Only the upmost respect for the choice we each must make.

Sent by Dale | 6:31 PM ET | 06-21-2007

Leroy,
Bless you for sharing your journey with this dreadful disease with the world, you are so courageous!!! The words and thoughts you share inspire so many lives and are such a positive influence on everyone they touch. Keep up the fight, you never know what is around the corner. Good luck with your treatments and decision.

God bless you
Pam T (breast cancer survivor

Sent by Pam T | 6:32 PM ET | 06-21-2007

Hello, I don't know why it is that after I read a cancer patient's quotes I think "I could have written that?" It must be that our thoughts all run in the same line, but some of us express them better. The part about in this crazy world it's easier to be the patient really hit home. In having cancer I sure have learned a lot more about living than before. And the bit about "Do I still have cancer" really hit home. Well, I know I have it now because it came back after it was supposedly in remission. But if and when we get it in remission again, do I say "I'm cancer free" again? Or do I wait another year before I make that statement. I even asked my Onocologist the first time, 'what do I tell people when they ask me if I am 'cured'? He basically said that I just inform them that as of my last tests I was cancer free. That seemed to work...the first time around....but your faith gets a little shattered when it returns. I still try to remain very strong & confident, but having lost a friend this past Sat. to breast cancer (I have ovarian cancer)...doesn't help the confidence level too much. But, yes, I know everybody's case is different....IF I've heard that once I've heard it a zillion times....not only from Doctors, but from many well-meaning friends. Thank God, for sites like these where we can express our feelings & make the day seem a little better. Joyce

Joyce E Wessley

Sent by Joyce Wessley | 6:34 PM ET | 06-21-2007

Right after he gave me my initial diagnosis (inflammatory breast cancer), my doctor said, "Now what we need to do is make a plan. It doesn't even need to be a very good plan right now, but you need to have something constructive to do in the next few days. Like most educated people, you'll feel better if you are involved and have goals." He was right, and ever since then I've had some sort of plan...not always a very good one, but it's always open to revision.

Stephanie D., you are not apart from anyone else here. Having limited options (or, finally, no more options) doesn't mean you're not a fighter, and that you're now off the team, and that you wouldn't "have a plan" if you could. That is a point we will all reach, eventually. Part of my plan has always been, what will I do when my treatment/maintenance options finally run out? It turn out that's actually been a part of my whole, mortal life, but I didn't realize it until I had cancer.

Love & anger, Leroy (and Stephanie)
jj

Sent by Joan Jones | 6:47 PM ET | 06-21-2007

Stephanie D
I am here in Germany and it's 1am. I can't sleep so I think I must be up to pray for you. I wish you strength so you can enjoy the time of your son's wedding.

Sent by Irene | 6:53 PM ET | 06-21-2007

I do like to make plans in general, so this Cancer has been frustrating at times. I finally have a plan after thinking my treatment plans might be exhausted. I have convinced myself to buy into the plan (stem cell transplant), but it's scaring the crap out of me. Of course, this treatment doesn't come with a start and end date - it is dependent on so many factors - so how do I plan for coverage at work? I have done 7 different chemo combinations so I have "suffered " and "tolerated" , but this feeels like the "big guns" and now I'm starting to wonder if I should adjust my expectations of what a plan is for me. I am going to move on this plan and hope for the best, but my next plan (whenever it is needed) might be to decided how long to lay in the hammock or what to watch on TV.

Jill

Sent by Jill | 6:58 PM ET | 06-21-2007

I agree that a plan is important. My husband has always called me an over planner. I find it comforting to have options and to know what lies around the corner. I'm in my last few days of preventative chemo. We know the monster will return again but not yet. As I'm finishing up the chemo I'm been doing for the last six months I feel a little weird without knowing what the next step is. We will continue to monitor of course but until the monster comes back or new ways of torturing me and others has been discovered that's it. So I'm trying to convince my self that the little things I do every day can be a plan. my new plan is to live every day to it's fullest (even if that's not getting out of my pj's), to give and get as much love as I can, and to slow life down a bit. I think that all goes along with my oncologist plan of a low stress environment. Low stress environment is now my oncologist number one plan of attack. Easy to say or to assign but hard to truly achieve. I'm giving it my all, new job, new hobbies, and a lot of support.

I will continue to have lot's of warm wishes for you Leroy.

Sent by Melissa Hartford | 7:30 PM ET | 06-21-2007

Dear Stephanie, so sorry to hear about your disheartening news. Any encouraging words I could possibly give you, I'm sure you already know. I think right now they would offer little comfort, so I won't burden you with them, but I will certainly pray for you and your family through this difficult time. Sasha

Sent by sasha | 8:09 PM ET | 06-21-2007

As Stephanie and Miriam pointed out, our tent needs to be big enough to include folks who have been told the medical community has no more options to offer them. I guess it's scary to think of ourselves being in that position, so we keep encouraging Leroy and each other to Be Positive! and Make Plans! and Never Give Up Hope! And that's a good thing, of course -- but let's make sure we keep our arms around those who are trying to accept that they may not have any more options, as far as treatment is concerned. Maybe more choices will be found for them. I hope so. But if not, well, they are still in our family. And it's not "bad" to decide at some point to stop scrambling around madly for another plan. I've been told acceptance can bring peace. Maybe that idea should be a part of our discussion too?

Sent by Doris | 9:21 PM ET | 06-21-2007

Decisions, Decisions, Decisions!! I use to love making them. I was so certain I was right most of the time. I was always told I was right. Now, I cannot make a good decision nor a plan if my life depended on it ??? no pun intended. These decisions will not be reversible. My Father-in-Law use to tell me if does not affect you in 5 years it did not matter in the first place. I may not have 5 years to find that out but does that mean it did not matter?? I am finding that nothing applies when it comes to making life or death decisions.

I use to say to the doctors ???IF I was your daughter what would you have her do?????? Then I realized I felt sorry for some of these doctors??? daughters. I feel as if I am in the rapids of life and I can only dodge the rocks and lately I have hit a few ??? like my water was turned off today. Still I know I am better off than some of you out there.

I know I am depressed ??? hell ??? who wouldn???t be. It just seems to snowball and then bang you are being taken away by the current and more battered than you were able to take. Being alone doesn???t help and friends seem to get tired of helping. They will turn the water on tomorrow and I paid next month???s bill in advance. I would pay online but they do not offer that option.

I think having a plan is the only sane thing we can have otherwise we are just drowning into too much information and avoiding rocks.

Keeping my head barely above water, Carole Ehlers

Sent by Carole Ehlers | 10:10 PM ET | 06-21-2007

Dear Stephanie

I, for one and believe everyone else here feels the same, am certainly not dividing anyone into any kind of groups!

I believe you do have a plan... you plan to attend your son's wedding in a week or so? You plan to maximize quality of life...

A plan is simply that... some sort of plan... longterm or shorterm... doesn't matter

I certainly do not feel in anyway you have "given up".... I am certain you have not!

You do have options... as Jan has also said.. you chose how you spend each minute of each day

So make that plan for your son's wedding.. and then plan to spend every day with those who love you and care about you... plan to make the best of what you have

This is not about great magnificient plans to change the world.. it is about planing what is important to YOU and no one else matters!!!

Stephanie there are MANY here and elsewhere who care very much about you and would never think less of you for any decision or direction or plan you make....

the whole basis of this community is supporting each other!!

I hold you up in my thoughts and prayers to give you peace and love and support as you face overwhelming decisions and circumstances

Sent by Ronald K. Bye | 7:33 AM ET | 06-22-2007

To Stephanie, Leroy and everyone who thinks they do not have a plan - you do. You got up today and decided to read these messages. Most times you do not know you have a plan but just doing things each and everyday and realizing at the end of the day you are here and did something you had a plan in your mind you just did not know it.

Sent by Cathy | 2:19 PM ET | 06-22-2007

Enjoy your book Leroy, you deserve a well deserved break! It's so nice to escape to another world in a good book.

Sent by Barbara Langan | 5:42 PM ET | 06-22-2007

Dear Leroy, I may have a suggestion for another plan. I am 45 years old, and have multiple myeloma, or cancer of the bone marrow. No cure, at present. My story, in a nutshell: right at the time my doctor was urging me to begin chemotherapy (January 2006), I came across the MD Anderson Cancer Research Center (U of Texas) studies on curcumin and myeloma. I read them, printed them out and took them to my hematologist. He agreed that I could try curcumin (the active ingredient in the Asian spice called turmeric) for a couple of months. So I did. First, I contacted the head curcumin researcher at MD Anderson who very kindly gave me the curcumin protocol. And in March 2006, after just 8 weeks on curcumin, for the first time since 1999, my markers improved. My Ig count went down about 20 percent, instead of climbing as it had been doing, slowly but surely. As a result: I haven't had chemotherapy, and my cancer is stable, now in the "inactive" or smoldering stage. I don't know much about brain cancer, but I did read that curcumin is being evaluated at the Miami Children's Hospital for brain cancer patients. And there may be studies of which I am unaware out there. A lot of people (doctors included) scoff at curcumin and natural remedies. But curcumin and other natural non toxic substances have been used in Ayurvedic and Chinese medicine for centuries, and have in recent years been tested against a variety of cancers. Nothing to be scoffed at. This is science. I am a researcher by trade, and would never take a substance not backed by scientific evidence. By the way, for those who would like to read more about this cancer and my story, I have a blog(http://margaret.healthblogs.org/). Thanks. Margaret, Florence, Italy

Sent by Margaret | 12:16 PM ET | 06-23-2007

Leroy~ Thank you so much for your honesty and openness!I was diagnosed with stage iv melanoma 5 mos ago. It was excised, 18 lymph nodes were removed and I am fortunate the melanoma appeared in only the sentinal node.I'm taking interferon and the concept of fatigue has a whole new meaning. Napping is not reserved for rainy Sunday afternoons anymore, it's mandatory almost every day. The other side effects from the treatment are not bad and most days I'm grateful the only really bad thing is the fatigue. But today I was feeling sorry for myself and thought "why am I taking this nasty stuff? it's optional". That is until I read your thoughts on having a plan. I had forgotten something very important in feeling sorry for myself - the PLAN for taking interferon is to kill any very very bad cells in my body. If it needs to mess up other things along with it - give me a rash, hot flashes from fever, poor circulation, mess with my taste buds, zap my energy, cause chemical depression (treatable with another drug) - so be it. The PLAN is much more important. Making the decision to take a treatment, making all the other decisions that go along with the disease, (which doctor to see, updating your will, cutting working hours so you can get treatment) are non stop and ever changing. But also empowering. Your blog about having a plan was a reminder to me when I had forgotten. THANK YOU!!! I wish you strength and well being.

Sent by Patty | 5:08 PM ET | 06-23-2007

"Carpe diem" to all.

"seize the day". or as errol flynn once said ~'live every day as if it is your last; because sooner or later you will be correct.'

i had cancer 2 times in 2 different places 25 + years ago. and i am a baby boomer who is still here.

Sent by peter | 10:28 PM ET | 06-24-2007