My Cancer

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A Life Reduced to Yes and No Answers

07:39 am

July 6, 2007

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by Leroy Sievers

I'm actually in pretty good health. Aside from the cancer, of course.

I had to fill out a lengthy health questionnaire for my meeting today with the new doctors. These are the doctors who do the new radiation procedure that I hope will work for me. They pretty much asked for my entire medical history. I used to breeze through forms like these. Lung problems? No. Heart problems? No. Kidney problems? No. Eye problems? No. No. No. No.

Until I get to the cancer section, or the previous surgery question, whichever comes first. These days, I find that there isn't enough room on the forms to answer these questions completely. Previous surgery? Yes. Colon surgery. Brain surgery. RFA on my lungs. Cancer? Yes. Colon. Brain. Lungs. Spine. Bones. Yes. Yes. Yes.

I've started to use shorthand too. When I was asked about where the cancer was, I would start a lengthy explanation, "It started with a tumor in my colon in 2001, and then in 2005 in the brain and lungs..." and so on. This time, I just put "multiple mets." They'll know what that means.

But it's still strange to put down so many "No's." I'm actually in pretty good health. Aside from the cancer, of course. They asked about pain. It's funny, my doctor told me to be aware of back pain because of the tumors on my spine. I told him that I'm 52, I have back pain. That's not what he meant, and that's not what the questionnaire meant either. I've never really had any symptoms from the cancer, aside from the slurring of my words when I had the brain tumor. All the pain, all the discomfort, came from the treatments.

Then came the psychology questions. "Are you generally satisfied with your life?" I wanted to say, "Yeah, except for that whole cancer thing." But that wasn't one of the options. It was yes or no, so I put yes. And that's true. I am. Except for that whole cancer thing, of course. Then they asked, "Do you feel severely depressed?" This time I answered, "No." The complete answer, "No, except when I think about the cancer, and what it has done to my life and the lives of the people I care about," wasn't one of the options. And that's true. I'm not depressed. Maybe they should have asked me if I get sad sometimes.

But all in all, reading my completed questionnaire, I seem to be in pretty good shape. Except for that whole cancer thing, of course.

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Discussions for this story are now closed. Please see the Community FAQ for more information.

Those yes or no answers do require and bit more space for the answer. The cancer thing does make me sad, not only for myself but for all those I love. It is a wicked disease. I need to ice my face because the chemo treatment yeasterday.
With care, Anne

Sent by anne lumberger | 8:02 AM | 7-6-2007

Hello, Leroy and all,

Many of us are in pretty good shape ??? except for the cancer thing ??? and what the treatments have done to us. And that is in some ways, the point. We still have much to offer, as this blog ??? both Leroy???s input and the others ??? both to cancer world and the larger worlds of pain, suffering and uncertainty of which it is still a part.

I am writing part of this Thursday evening, even before seeing tomorrow???s blog, which may add further food for thought. The last two day???s blogs and responses have been impressive and moving.

What next?

I have gotten one response so far when I asked whether anyone was interested in doing something one a groupwise basis about the medical system and insurance mess that has many of us frustrated, angry and frightened (again the email is johnshippee@hotmail.com). That???s one that affects more than ???just us??? ??? including the ???invisible vets??? ??? the 120,000 contract employees who are in Iraq/Afghanistan along with the troops whose insurance situation can also be horrendous. According th a lead article in the 7/5 New York Times they are just as subject to ling-term physical and psychological wounds as the soldiers they work with.

I also just received an update on the work of a rather wonderful AIDS orphan care program in Kenya to that I am in touch with. Where do we put the often limited energies that are left after the necessities of treatment, daily life and dealing with ???the system????

We all, some soldiers and many survivors of other serious diseases are being victimized by medical and payment systems that are run primarily to maximize profits and minimize expense. As at least one person wrote, the overall system focuses on high cost, high financial return treatments, rather than the broader prevention and positive health measures that could prevent many of our illnesses in the first place. Both are necessary and both could be funded under a people-centered health promotion and death prevention system in a nation that was not wasting huge resources on creating more psychologically and physically injured veterans.

I think we could usefully think the ???what to do??? question through together ??? possibly using this blog as a vehicle (Leroy?) or starting another one ??? I???m giving this serious thought. This blog has shown that together we have:

?? Considerable significant experience with potentially deadly disease ??? in particular cancer ??? and a great deal of intelligence about it.

?? Lots of contacts

?? A wide variety of gifts and assets that can strengthen each other if identified and used to gether

?? A nationwide spread, that could be further identified

In addition we have the moral and experiential authority that goes with having and having fought our diseases and not given in to them.

Surely we can translate all of this into influence, action and alliances that can help bring the medical and payment system back toward a survivor/patient orientation that is worthy of this country. Where and how can this leverage most effectively by employed? I look forward to your responses.

By the way, I will be on vacation and largely out of touch with the Internet from July 10 ??? August 3 ??? perhaps to some of your considerable relief ??? so my contributions are likely to be be much more sporadic for the next 3 ??? 4 weeks.

Vaya Con Dios,

John Shippee
Atlanta, Georgia

Sent by John Shippee | 8:09 AM | 7-6-2007

Leroy, I'm crossing my fingers and toes hoping you get the novalis.

My husband used to say the same thing, "except for the cancer, I'm in good health!" And yesterday's post also reminded me that he never forgot that he was much more fortunate than so many others.

Take care and Good Luck today!

Sent by Marilyn | 8:14 AM | 7-6-2007

Leroy

I am very glad to hear you are in such good shape.. except of course that whole cancer thing! LOL

Remembering back to my treatments 32 years ago (and we are the same age by the way :-)... I remember clearly the doctor asking me at each treatment/visit... "how are you doing.. how are you feeling"... and my answer...

"I feel GREAT except when I see YOU!" LMAO

But it was TRUE... I did feel great except for the darned treatments.. and that makes it soooooo much harder to deal with the debilitating affects of the treatments!

THAT was the depressing part of it... not being quite sure if the "cancer was killing me or the TREATMENTS"???

I have been so blessed since... I have never had ANY issues since... no recurrances.. no long term affects.. in fact I am so seldom sick at all! I have not seen an oncologist for 25 year or more... and have seldom seen a doctor period!

I do however suffer what I have heard terms "white coat syndrome".. meaning I have near panic attacks or severe anxiety when even thinking about going to a doctor! I suspect it is a form of post tramatic stress... for years I had all I could do to even VISIT a loved one in the hospital... my palms would immediately begin to sweat.. my heart would race.. and that was just walking in the door of a hospital or doctors office............

Thankfully I still have mostly "no's" on my medical history!! Well except for that whole cancer thing in 1975......

Have a GREAT day Leroy!!!

Sent by Ron Bye (NH) | 8:20 AM | 7-6-2007

Thanks again, Leroy, for reminding us that, even with the cancer, we still have things to be thankful for. I can imagine if I did have other health problems, how much more difficult it would be to tolerate chemo! Imagine having diabetes and needing to regulate the blood sugar with diet when you are nauseous and the thought of food is revolting!

I used to check 'NO' on everything, too, before cancer. And those questions on emotions are almost comical! "Do you experience anxiety?" Well, I guess so! Who wouldn't?

Sent by Sandra Shuler | 8:52 AM | 7-6-2007

I'm home. The surgery went well. They could not use the new VATS technology to do the surgery so they did have to do an incision and chest tubes, etc. Physically I feel better than after the other surgeries, however the pain is much greater. I appreciate all the comments and support from the blog. I can now add Lung problems: ONly cancer and lung surgery to remove tumors to remove it.

Sent by Dona | 8:57 AM | 7-6-2007

Go Leroy! Best of luck.

Regarding forms: I sat down at my desktop computer one day and started a rather concise medical/surgical history for my sister. Because I worked briefly as a PA, I followed a similar format I had learned in school. I saved it as a file, and each time she has an appointment I print out 2 (always one as backup just in case) and update it after each visit/scan/biopsy/ whatever.

It comes in handy. Yes, we/she/I still have the forms, however, I don't go into many explanations, I just say see attached.

The other advantage of having this, it frees me up from having to be with her for appointments. Ok, call it selfish, however, I have pushed, shoved, and fought for my sister to be as independent as possible, and this has worked.

The physicians she sees appreciate the update, it can become a part of their file, being replaced by a new one at the next visit, it is legible (her handwriting isn't the best), written in language they understand with abbreviations, contact info, allergies, the whole magilla.

Sending you very positive thoughts, Leroy... Have a great weekend, and thanks to all.

Sent by Susan Chap | 9:11 AM | 7-6-2007

Dear Leroy,
I just started reading your blogs after I watched the Discovery channel special.I can not believe how your comments have mirrored my thoughts and feelings of the past 7 years. It is like you are reading my mind.Thank you for putting my emotions into words.It helps me not feel so crazy or alone.
Thank you, Linda Dundore

Sent by Linda Dundore | 9:27 AM | 7-6-2007

Leroy, I have many many times in the past couple of years had exactly that reaction to questions like that on various forms for various doctors. It actually made me laugh quite a few times - I was so amused by the irony of being the picture of health - except for that pesky cancer.

Sent by Gretchen Hoag | 9:36 AM | 7-6-2007

Hi Leroy and friends,

Yesterday I was thinking about what a significant difference you are making in the world. So many people you don't even know are being helped by you. You are inspiring. I especially appreciated your blogs of July 4th and 5th. Thank you yet again.

I've been struggling the last few days. I'm really starting to feel the side effects from the radiation to my hip. And I'm so very tired all the time now. The doctor said that is normal and can be attributed not just to the radiation, but also to the fact of the reality of my situation. That being that cancer went from my lung to my hip, and what that means.

This summer has been so beautiful here in Seattle. I know how blessed I am to be able to be here and enjoy it. But I'm feeling sad and frustrated again. Then the sun rises and birds chirp and the wild rabbits hop by my door and my husband tells me how much he loves me. And I don't want to die soon and leave all of this.

I pray for the strength to get through the next 5 minutes. I pray to deal with this situation with grace and humor.

I've never been a very religious person but I pray a lot now. And it helps me get through.

Stephanie, I think about you and your courage and strength every day. I really admire you. I pray you are not in pain.

Thanks everyone. Laurel

Sent by Laurel M. Jones | 9:42 AM | 7-6-2007

I love you LeRoy, for who you are and what you do here.
Speaking of forms,last night my husband had an appointment with a long term care insurance salesman. Won't have to fill that one out!
I felt so good last week I knew this was all a big mistake :}. I had my second round of Chemo tuesday/ quite a reality check. I had a bit of an emotional meltdown in the chair, just felt like crying (which I have always excelled at). I was eased through this by my caring oncology nurse, my nurse practitioner and the resident social worker. No it wasn???t so bad I needed 3 people, they are just caring. I am now on anti depressants, was overdue I am sure. Is there really a differnece between sad & depressed? Is one just more of the other at one time? Doesn't matter, I guess, whatever gets you through the night, is alright, is alright.

Sent by Diana L Santamaria | 9:48 AM | 7-6-2007

Hi Leroy,
I am hoping and praying the new radiation treatments will be a success. I felt the same way when I used to fill out forms in the doctor's office. I felt quite fortunate except for that breast cancer thing. I refer to my breast cancer as "when I was diagnosed", not "when I got sick". I never felt sick until they started the treatments. Anyway, good luck, we are all rooting for you!

Lianne

Sent by Lianne Friedman | 9:51 AM | 7-6-2007

Leroy......you made me laugh. It was a good feeling to be able to laugh about cancer. After my cancer surgery and I was seeing the dr to determine what would happen next......I too had this type of questionnaire. It was almost all "no's" until I came to the cancer part. My Dr. asked me what kind of health did I think I was in. I said pretty good! He looked rather strangely at me and said maybe we should say good? ok. Whatever.....I still feel pretty good! ;o) Lung cancer doesn't define me, and the Dr still looks at me rather strangely. ;o))) I wish you the best Leroy and please continue to be in good shape.

Sent by joane | 9:54 AM | 7-6-2007

Yep, those forms always leave me bemused. I'll be having a bone scan this morning and an MRI Monday morning, so the paperwork will be asking me those same questions -- and no doubt, I'll say I'm in "good" health. Or maybe even "excellent"...except for the Stage III cancer thing, which may or may not have metastasized. Maybe they need to modify their forms a bit. I always feel this evil, ironic grin spreading across my face as I fill in the blanks...

Good luck in getting the treatment you want, Leroy.

Sent by Doris | 9:57 AM | 7-6-2007

Leroy,
Good morning to you. I hope for the best for you.
This may be rather a pessimistic outlook, but I feel they keep the answers to a yes or no because they don't really care. I understand that it is impossible to immerse yourself into the personal lives of every patient, but at some point people need to tell someone, to let people know how you feel. It's necessary to keep from exploding with the stresses of the disease. The thing that just gets me, is how they don't want to tell you what the possible symptoms are or may be. The comment to me always is "...if we told you all that could happen, would you go through the treatment?" My answer always is "...with death as the only other possible option, yes!" I don't think they gather how we grab onto the little victories. Give me a list of 200 possible side effects, and if I can only find 199, then I'm 1 up on the disease. Victory is mine. Questionaires and treatments and suggestions and diets and exercise plans all developed by people that don't have a clue because they haven't been afflicted with this disease. Before I was diagnosed with it, I wouldn't have thought that it made a difference. They don't truly understand.
I do feel fortunate and in better shape than a lot of others. All I am asking is that they acknowledge our successes and setbacks, and lend us support at times when we feel down.

Sent by Lance Carlson | 10:07 AM | 7-6-2007

Good morning Leroy/All

Good luck with your consultation today Leroy. I hope all goes well.

One day while I was beside my husband,watching him sleep through his chemo the oncologist came in with chart-in-hand, looked at the chart then at my husband and told me " Your husband is a very healthy man " With that he said his goodbye and left. I can remember sitting there dumfounded, unable to digest what I just heard. It made absolutey no sense to me. I was told this man has metastatic disease. Then during the latter part of the day the doctor stopped by again; that is when I asked him to explain his statement, and he said exactly what you described in your post today.

I have followed your blog and it seems as if my husband and you are following the same path. He, like you, is a big strong man in very good health. He, like you, can be , as Laurie put it "Poster boy" for chemo. He has not dropped any weight and has not lost his hair. He also had the same scenario as you regarding his tumors. He has had the same mixed results with the pulmonary mets, some stayed the same, while others grew.

I am still waiting for the oncologist to make a decision about the RFA. Right now we are still doing chemotherapy. We go for the next scan in July and take it from there.

Again, good luck today Leroy. Let's all hope for the best. Sasha

Sent by sasha | 10:07 AM | 7-6-2007

"Other than that, Mrs. Lincoln, how did you like the play?" I read this somewhere years ago and your blog today brought it back to mind. Take care, Leroy.

Sent by Denise | 10:16 AM | 7-6-2007

Dear Leroy,

Thank you for writing your blog and sharing your most personal things with all of us. As I posted before I am one of the people on the other side - my Mom has colon cancer advanced stage. She is a fighter just like you and tries to see the positive things in life. I am proud of her and her outlook.

When I read the post about the health insurance issue I was very much reminded of what happened to my Mom these past few weeks. She got diagnosed and the beginning of the year. The health insurance has it taken upon themselves to try to get my Mom to retire (she is 60 and has 5 more years before she normally could retire).. They started the process without even asking her. My Mom is very active and prides herself that she was a very good worker (until she got sick). She clings on to the hope to be going back to work one day. Even if this might not be the case but this little bit of hope keeps her fighting. And now this whole mess with the health insurance. My Mom was so upset that she got even more sick. (Plus there is the financial burden which I won;t get into here) I was outraged about the fact that the insurance wants to get rid of her so they won't need to pay for her treatments. I am so mad and I wrote this long e-mail to the case worker about how inhumane they are and how they treated her and such...if I would have been on-site (back home in Germany). I would have gone to see that person. My Mom needs to fight and not need to be told "There is nothing to do, so we send you off to retirement." Who are they to say that there is nothing to be done! I mean yes, she is very sick and she will die one day of cancer but who knows when this will be?!
So now my Mom and Dad are fighting the cancer and the health insurance...

Rhanks for reading my post and my rant. I am sorry to burden you with my problems. I can only try to understand what cnacer patients go through at this time I am only a by-stander that feels absolutely helpless...

I love my Mom very much and it saddens me to be so far from her (we are very close and I don't have any siblings) and not being able to help her more. I wish I could be with her every single day and enjoy life with her!

Sent by Cory | 10:22 AM | 7-6-2007

Leroy,

Your comment about the cancer making you sad at times made me giggle. Does sad cover it for you? Really? Bless you. I don't think sad is a strong enough comment for me. Maybe I'm in an earlier phase of dealing with this. I'm so angry I want to poke someone's eye out with a fork. Probably this emotion is working against me and I try to keep it in check but I really would like to punch my fist through the wall. Since I don't have coverage on diagnostics anymore I better not break any bones in anger and have to pay for an x-ray. That really would make me mad.

Here's to a good weekend for every reader here. We all could use one.

xo
Lori

Sent by Lori Levin | 10:31 AM | 7-6-2007

I know I'm going to botch this quote from Richard Ford's great novel Lay of the Land, but it goes something like this: His ex-wife expresses her sadness for his "illness," to which he inwardly responds, "Illness? I'm not ill. I just have cancer. That's not ill. It's just fatal." Isn't that the rub, though? This cancer keeps coming at me in blood draw numbers and pictures on scans, but it's such an abstraction: not really there until treatment and then I REALLY feel it.

Sent by Michele | 10:32 AM | 7-6-2007

I laughed through today's blog. I thought I was in perfect health before the treatment. Never have known any symptoms of cancer. Now I have known many symptoms, but they are not of cancer; rather they are side affects of treatment. So, what gives? Have I improved my life by making it worse? John

Sent by John | 10:41 AM | 7-6-2007

Come upon this blog today. Loved your post. Even though I don't have cancer, it made a whole lot of sense and I found it very moving.

Sent by Dana Helton | 10:46 AM | 7-6-2007

Leroy,

My Mother's doctor said the exact words to her, "You're in excellent health, except for your cancer." She still chuckles over that.

I have been seeing a therapist while my Mother goes through this. I am sad too. The therapist did say to me, "Well, I do think you are depressed."

Ummmm. How else could I possibly feel? My Mother has stage 3 ovarian cancer. Am I supposed to be running through the daisy fields?

I myself would describe it like you- sad more than anything else. Thanks for giving us a place to be sad together and not feel like we're crazy for being so.

Sent by Elizabeth from Brooklyn | 11:05 AM | 7-6-2007

Dear Leroy and All,

Just wanted you to know I am thinking of you and praying for the treatment to be successful. Much comfort and hope to everyone.

Connie E.

Sent by Connie | 11:05 AM | 7-6-2007

When I do see the oncologist, or my internal medical dr., for the high bp caused by avastin, they both have said that if they passed me on the street they would never dream that I was full of cancer.

Sent by helen | 11:27 AM | 7-6-2007

Your blog entry today reminded me of one of my favorite sayings - "Other than that, Mrs. Lincoln, how was the play?"

Sent by Phyllis Ally | 11:34 AM | 7-6-2007

Over the years I learned it was a pain filling out the doctors forms. So since I used computers at work, on my home computer I set up a spreadsheet for my 18 different medications, the dosage, the prescription number,date last filled,and a formula that calculates when the Insurance will let you refill it next month. I also made a medical history with dates procedures and tests that were done. True it is a pain to keep the data uptodate but when I had my last heart attack, my wife was able to hand the doctor my life history and allow him treat me quickly(he was blown away by all the information). Now I can keep updating my history. I am looking at putting my medical data on a memory stick where any computer can access all my records. All this information helped when filling out the VA and Social Security Disability paperwork.
When I go to the doctors now I have copies to give them. It saves the doctor from searching back thru your folder for a test or treatment date. Plus I get more time to read my book, this week is Judas Strain by James Rollins.

Sent by Sam Means | 11:39 AM | 7-6-2007

Scribble freely in the margins and add as many pages of addenda as necessary to give YOUR answers, not the ones forced by a form. That "feedback from the front" may help the system ask wiser questions in the future!

Sent by Sarah | 11:41 AM | 7-6-2007

A pretty healty guy, except for this one problem, is the way my doctor puts it. I'm in a clinical trial for recurrent prostate cancer. Chemo, then hormones is the treatment. A nice thing about a clinical trial, for those contemplating the idea, is the methodology includes 'getting baseline information'. This is partly to establish that the treatment doesn't make you any worse in the long run, I guess. As a result of the baselining, I know my heart, bone density and quite a few other things are 'normal'.
I have all the emotions Leroy hits in today's blog, and the longing for the normal, as past postings talked about.
Right now I have passed the chemo stage about four months ago, am in the hormone treatments, and most days can be considered 'normal' - normal activity, normal emotions, etc. It is kind of like the liberal arts college kid who stresses about which college to choose, then goes on autopilot for four years until graduation, then stresses again because no career path has been disclosed. What comes after commencement ?
So I am in the normal mode. With an asterisk, of course.

Courage. Resolve. When, possible, humor !

Jack

Sent by Jack Burrington | 11:42 AM | 7-6-2007

Leroy,
I am a 53 year old woman who has breast cancer.
I took one of those on-line longetivity tests that show your "real" age. I was moving right along, being that I'm in excellent health. I don't drink, smoke, or live recklessly. Nor do I have heart disease, diabetes, weignt problem, etc. In fact, most people think I'm alot younger than I am. Then, the question of cancer came up. I was at about "45" years old as my "real age" until then. After I answered the cancer question, my "real age" went up to 85! Made me feel terrible. I will never take one of those tests again!!

Sent by Lorraine Ballarin | 11:48 AM | 7-6-2007

Leroy - Somedays I print your blog and show it to my boss, she's a Nurse Practitioner and owns a primary care practice. Today I printed your blog for her and she wanted me to send you on her suggestion - Next time you have the yes and no questions - draw an arrow and write in the border of the paper your thought about the question and "except for the cancer thing"!! Actually, sometimes those generalized forms get to be boring reading for the providers as well - Everyone in our office wishes you the best of luck with this procedure.

Sent by Linda | 11:52 AM | 7-6-2007

Last week I saw the new M. Moore movie Sicko. A very sobering documentary. In so many cases the insurance companies use the answer to these questionaires as screening devices to deny coverage for "pre-existing conditions". One has to be very careful!

Sent by Jacqueline Roose | 11:57 AM | 7-6-2007

i wear my cancer scares PROUDLY as , i too look the absolute picture of HEALTH!

Sent by marianne dalton | 12:03 PM | 7-6-2007

Leroy, As usual, your post was in my in box this morning. When I read it, I laughed! I feel the same way, previous surgeries... well which of the 32 do I put down? So I have resorted to the most major ones! Mastectomies, pacemaker, spleenectomy, etc. Then as you said, previous cancers - well yes - this one, that one, that one, etc. I like your term multiple - think I might try that one next time I have to complete one of those lovely forms.

I didn't post about a few of the previous ones, I have been trying to deal with work life as normal, not a living with cancer person. But I have to differ that your blogs are too optimistic or not realistic. I think they are great. We all need some real news, if you just call the insurance company and say - why did you deny that? Many times they just simply deny it and so many people don't even try to fight the denial. At least try - the worst thing that happens is you are still denied. But you might be pleasantly surprised and they pay for it.

Here is my story of being plesantly surprised, wasn't really a insurance issue but was a result of a insurance issue:

When I was diagnosed with breast cancer the 2nd time, I made the decision to go to the doctors I went to the previous time even though they no longer participated in my insurance plan (a major one i will note). So when I started getting the hospital bills that were only paid at 80% of what the usual, customary and reasonable - I called the hospital and asked why... they and the insurance company said, because while they were part of the network, the doctors I used are not anymore so I had to go on the 80-20 payment vs. the 100% of the hospital bills being paid. Anyway - long story short, I was on disability, a single mother getting 60% of my salary. How was I going to pay these bills plus a mortgage, after school, electric, etc? I said this to the hospital and the gentleman said, why don't you ask for assistance? I said, I make too much $ for that - I don't make minimum wage, a year so I would never qualify for assistance! He said - no - this hospital offers assistance no matter your income level - based on your particular circumstance. So he sent me the paperwork, I completed it all showing all my debts, hospital, doc bills, etc. And low and behold - they covered the costs for the hospital! I would not have know about it unless I asked! So my point is try, ask, explain your situation to someone, keep trying, get someone to listen - you want to pay your fair share but you can't pay it all and forgoe the rent/mortgage!! Again - what is the worst that happens, they don't pay and you are stuck with the bill. Everyone from docs to hospitals are more than happy to get something from you finacially as long as you show a commitment to try!
So when you are at the lowest points you feel from your cancer to your money situation - keep trying!

Ok - I have gone on long enough. But your blog is not too optimistic, un realistic - it is honest and true. Thanks for doing this!

Sent by Andi Arabak | 12:08 PM | 7-6-2007

Leroy,

I wonder why the system doesn't forward our previous questionnaires to the new people we deal with? Then they could just add the questions relevant to the new treatment.

Anyway, red tape is red tape.

I am wishing you the best possible outcome from the new procedure and am assuming you will qualify for it.

Sent by Diana Kitch | 12:18 PM | 7-6-2007

Leroy, that was great. How about any allergies? I can say yes to that, the CT dye. Or have you been exposed to chemicals, pesticides, etc. I started laughing when filling out that question. I said of course, I grew up in the Midwest. I'm blaming my cancer on all the apples I have eaten. Have a good weekend. Thanks for the laugh.

Sent by Lisa | 12:24 PM | 7-6-2007

I have been fighting Stage IV colon cancer since 1998. I have had three colon surgeries, two liver surgeries, and one lung surgery. Several years ago, I listed all my surgeries in my word processing program along with several I had before cancer. I routinely bring the list along with me whenever I see a new doctor.

Sent by Carl Volkmann | 12:39 PM | 7-6-2007

Leroy,

I think most of us felt fine until the treatment started. I, too, considered myself in excellent shape and I could have done physical feats never accomplished in the 45 years leading up to my cancer.

Thank you especially for today as you had me giggling like a school child as we filled out your form together! I value and treasure each and every moment shared with you not only because of the bond we share in cancer but because you have courageously chosen to let me into your life.

Today, my uncle who was told to go home and die in a few weeks will be going home after about 10 weeks of brutal treatment for leukemia. He left so quickly he didn't say goodbye to his friends. As we speak, he is seeing those friends to show them he is back...ready to resume life...leukemia free at least for today.

May your today be grand and wishing you at least tomorrow...that it be even grander!

Sent by Ed Brown | 1:30 PM | 7-6-2007

Is there anyone who gets cancer and DOESN'T get depressed about it?

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

Sent by Carl Wilton | 1:32 PM | 7-6-2007

I remember when I first came to M.D. Anderson. I had to complete the same, obligatory questionnaire. When asked if I was depressed, I said, "Yes". When asked if I was in pain, I said, "Yes". When asked if I was generally satisfied with my life, I said, "Hell No!???
Needless to say, I got a prompt referral to a psychologist. Our session didn't take long. I asked him if he could get rid of my cancer. He said, "No.". Then I informed him that all of my depression, pain (physical and emotional), and lack of satisfaction stemmed from my cancer.
So, it doesn't make much sense to me to say, "Yes, except for the whole cancer thing." because that "whole cancer thing" is a huge thing. I wonder if we all counted how many hours we've spent crying in front of the toilet because we simply couldn't bear one more hour with chemo, yet we knew this torture was far from over.
So for one to say, "Otherwise, you're in good health." is quite unnerving to me because it fails to consider the enormity of the impact that cancer plays in every facet of our lives.

Sent by Michael McGalin | 2:06 PM | 7-6-2007

I was struck by your answer to the depression question--another instance of you nailing it, and thank you very much! My docs and nurses sometimes ask if I'm depressed--that's when they're not actually diagnosing and telling me that I am. If my feelings can be called depression, then it's a depression that is as much a roller coaster ride as living with cancer in general. The days I don't have to go to the clinic for testing or treatment and I'm feeling reasonably well physically are days my spirits soar and my life and state-of-mind feel quite normal. Days of treatment, not-so-great test results, and physically feeling poorly are days when my spirits can sink pretty rapidly. When I ponder true depression, I don't think non-cancer folks who are depressed bounce in and out of "depression" as I seem to do. It's an especially hard row to hoe to remain hopeful and optimistic and of good cheer when one is feeling physically lousy. But that said, yes, I too feel quite satisfied with my life--except, of course, for the whole cancer thing. If you don't live in Cancer World, I don't think you can really understand this. I would surely put those questionnaire creators in this category!

Gilda Radner talked about wanting to be with "her people" during her struggle with cancer. Thank you for this blog that allows us cancer folk to be with "our people." Even on my so-called depressed days I feel buoyed up after reading your blog and your readers' comments. Thank you again, Leroy and all of you, and peace to you.

Sent by Shonda | 2:14 PM | 7-6-2007

Leroy - You are an inspiration and an affirmation! When all else fails our attitudes will see us through. Just a bit ago I finsihed my first Kundalini yoga session. I've done other kinds of yoga before but thought I would try something new. On the 4th my husband and I took a lengthy bicycle ride. Just about the only time I feel bad is after a chemo treatment. And, yes, once in awhile I get down in the dumps. I found out this past Monday that those pesky tumors in my lungs have started growing again. That news kicked me in the you know what for a couple of days. I have breast cancer mets in the lungs. So, this coming Monday me and my doctor will sit down and figure out what to do next. Since the chemo I was taking has stopped working it will mean we will start a some new type of chemo. Living with cancer is just that. It is getting up and going to work, bike riding, doing yoga, talking to the kids, kissing the spouse, and oh yea - handling that whole cancer thing. I just hang on to the blessings I have. I look for the blessings that come with cancer because there are some. And thank God for the time I have been given right now.

Sent by Kim Barbato | 3:21 PM | 7-6-2007

The same, but different.....How many times a day do people ask you "how are you doing"? I've been at this for 2 years and still have not perfected an answer. Mostly the answer is simply "good, thanks. But there are days and certain moods and circumstances that produce a response that I am not proud of. Then there is the task of trying to decide if the person is really interested or simply parroting the greeting. And the times I get it wrong, how long does it take to register on their faces? Ohhh, this is an interesting business. Leroy, you are in our thoughts. Thank you so much for sharing with us

Sent by Jim Wallman, Dillingham, Alaska | 3:33 PM | 7-6-2007

Hi Leroy!

I absolutely relate to what you are talking about today. I too am in perfect health except for the whole "cancer" thing. I'm 43, never had any problems with health except for a little acid reflux. I worked out on a regular basis, ate pretty good, don't smoke or drink. How did I get cancer?

A family member just said to me the other day "You know when you were sick?" When was I sick? I was never sick. I never even got colds. It's amazing how this disease just sneaks up on you. One day I'm completely healthy....and the next the doctors are telling me I have stage IV FNHL. Tumours everywhere! I'm in remission now...but I live everyday knowing that its lurking...just waiting to pounce. A day doesn't go by that I don't think about it. Before cancer I lived a kinda "care free" life....now I feel like I have one of those sand timers over my head. It's a heavy burden to carry around.

I wish you all the luck with your new treatments. You are in my prayers.

Sent by Waynette | 4:15 PM | 7-6-2007

Dear Leroy,

Do you get sad sometimes? And what do you do when you are sad?

I, too, hope you get the treatment that will be the most helpful to you.

Sometimes it's a little eerie how you seem to have a bit of a window into my life -- I too have a long health questionaire to fill out for this Tuesday's appointment with a sarcoma specialist at Johns Hopkins. It's late Friday afternoon as I respond to your blog, and I'm feeling a mixture of weariness, fear/anxiety, hopefulness, boggledness of mind and body....my plans these days are to just do the best I can, and show up for what I need to show up for. That's one of the hardest things for me now, I want to run and hide.

What I find both wonderful and scary is how each one of us is a window for another human being. That, we are all connected thing. It's true.

I'm wishing you, and all those who read and/or post here, as good of a weekend as it's possible to have.

Heartlight and peace,

Kim B.

Sent by Kim Blankenship | 4:33 PM | 7-6-2007

Dear Leroy,

I believe the topic of your discussion today may be one of the reasons I have had a difficult time getting some much-needed medical attention. I have been told by a couple of doctors, candidly, when they pick up my chart and read my history, it may be intimidating to some, with all the complications I have had both before CANCER and after being diagnosed. As you are well aware, I am a bit "detail-oriented", and I do not know how to check the YES or NO blocks, and I am afraid if I leave out any pertinent information, it may be that one piece of information needed to solve the mystery of my illness. But, it could also potentially create some of the problems I am experiencing getting the proper care for my illness now. So I understand completely how you feel when faced with the task of filling out a medical history form that barely has room for your name and addresss, much less the reality of the information necessary to complete our
complicated histories.

I received a surprise when I opened my mail last night, a letter from Medicare
telling me the disk that holds any medical information since 2003 has been "misplaced". They still do not know if it was lost or stolen, so now there is the possibility that not only could someone steal my financial identity, among other things, but also warned me someone may be using my information to get the treatment I have been unable to obtain, in spite of all my efforts and worry over the status of my CANCER. I did not need this added burden, since I am already so weary trying to do all I can to advocate for the care I need and deserve. When I spoke with them today, the person I talked with was kind and effficient, but had no idea the frustrations I have already been faced with since my diagnosis/mis-diagnosis, and had no way of knowing the effect it has on my present state of mind and frustration factor, already in complete overload with the mistakes that have been made. It was all I could do to keep from breaking out in tears, but she would never have the time or inclination to hear the story of what I have already been through, and now the workload has become so monumental, it may just be the one factor that pushes me over the edge, but then I would not have to face solving this puzzle or continue my fight to get what I need. She also suggested I call and involve the FBI in the investigation, but I think I may first contact the newspapers and a very good investigative reporter and let them do a little exposing, as I have displayed my body in more places than I care to talk about (medically, of course). Can you believe this?

Thank you all for being out there and listening to me babble about this. Without you I surely would have given up, and I am not ready to give in to the depression and frustration and I will continue to fight for, at leat, one more day.

Love,
Briana

Sent by briana | 4:34 PM | 7-6-2007

Has anyone tried Avemar???? I have read so much valuable information on it and it sound promising. I think I will start taking it.
............
The role of the product in the treatment of colorectal (colon) cancer is reviewed in the light of experimental and clinical results to date. The fermented wheat germ extract (code name: MSC, trade name: Avemar) registered as a dietary food for special medical purposes for cancer patients to complement the active oncotherapy, exerted a growth inhibitory effect in HCR-25 human colon carcinoma xenograft, and had a synergistic effect with 5-FU in mouse C-38 colorectal carcinoma. The product is capable of chemoprevention of colon carcinoma in F-344 rats. One of the most significant underlying mechanism is a highly cancer cell specific induction of caspase-3 mediated cleavage of PARP. In the frame of supportive therapy, fermented wheat germ extract proved to be efficient in the treatment of colorectal cancer in humans. 30 patients following radical operation were treated with standard postoperative therapy, 12 of them were given fermented wheat germ extract as additive treatment: following a 9 month long administration, no new distant metastases were detected, in contrast to 4 out 18 treated with standard therapy alone. Out of 34 patients following radical surgery and treated with chemotherapy, 17 who were given fermented wheat germ extract, achieved an improved survival rate. In the frame of a controlled multicenter open label cohort study, 170 colorectal cancer patients received anticancer therapies (chemo/radiotherapy) completed with fermented wheat germ extract in 66 of them. Results (fermented wheat germ extract vs. control): new recurrences: 3.0% vs. 17.3% (p < 0.01); new metastases: 7.6% vs. 23.1% (p < 0.01); deaths: 12.1% vs. 31.7% (p < 0.01), progression-related events in total: 16.7% vs. 42.3% (p < 0.001). Survival analysis showed significant improvements in the fermented wheat germ extract group, regarding progression-free (p = 0.0184) and overall survival probabilities (p = 0.0278). Strong predictors of survival determined by Cox???s proportional hazards were UICC stage and fermented wheat germ extract treatment. Mild gastrointestinal side effects were observed in 9 cases. Supportive application of fermented wheat germ extract in colorectal cancer is highly recommended.

Here is some more information on it:

http://www.google.com/search?q=avemar+Fermented+Wheat+germ+extract&rls=com.microsoft:en-us&ie=UTF-8&oe=UTF-8&startIndex=1&startPage=1

Or just type in 'Avemar' in Google.

Sent by sue | 4:34 PM | 7-6-2007

Leroy, I hate those forms. They try to condense a life into a group of facts. How many yes answers constitute failure, I always wonder about that one. I don't have room on the form anymore, so I take a typed history of my own. Seems simpler, at least to me. I don't have to think about all the things I have been through. I hope the answer is yes. We are waiting with you. Stan

Sent by Stan Wozniak | 4:47 PM | 7-6-2007

I've never liked those forms.. either as a patient or as a physician.. i'd rather get the answers straight from the horses mouth (so to speak).

Sent by Krupali Tejura MD | 5:06 PM | 7-6-2007

I have trouble when I need to rate my health. Is it excellent, good, fair, ??

I was completely taken aback when the time came for my first post-diagnosis flu shot. I asked my oncologist if I can have a flu shot (I was on dose dense chemo). She said yes, but I don't qualify for special risk since I'm in excellent health.

Excellent health? Well, yeah...except for the cancer thing.

Sent by Karen D. | 5:39 PM | 7-6-2007

Dona: WELCOME HOME! So glad to hear that your surgery was without complications. Best wishes now for a smooth recovery. Take good care of yourself. Thanks for the message!

Sent by Sandra Shuler | 6:08 PM | 7-6-2007

Some things you just can't answer yes or no. I also felt good until that cancer thing came along. Thanks again Leroy for saying what we are thinking and being there for us.

Sent by Vicki (FL) | 6:11 PM | 7-6-2007

Levity in your blog today but maybe not so for many unless you have a quirky sense of humor...I do!

"I am in great shape for the shape I'm in or If I had known I'd live this long I would have taken better care of myself." Trite but humor helps!

As most of you, the same information going onto yet another form for another hospital or doctor or perhaps even the same hospital or doctor drives me nuts! I am the same guy who was here 3 months ago or last week. I gave you my history and you thought so much about it that you discarded it after my last visit!! The hospital information systems and the patient information systems are a joke! They don't seem to retain the important info at all so that we can fill out the same forms, answer the same questions so that these can be discarded immediately after we leave the premises. There is a greater chance of curing cancer than it is to cure the stupidity and incompetence in the hospital information systems that are supposed to be helpful to us as we navigate the healthcare maze. Sorry for the rant but I believe that it is justified.

Forms and more forms but the questions are largely the same. I sometimes think that we (cancer patients) should have our medical history and vital information imprinted on a computer chip and imbedded underneath our skin like some animal owners do for their pets. We could then go to doctors and hospitals and get scanned and viola', our history is there. No more forms with the same questions and the answers we have given a hundred times.

I'll stop now... our healthcare system has its many faults but I am glad we have it.

Hope you get good news and it is a go...

Blessings and prayers as always.

Sent by Al Cato | 6:56 PM | 7-6-2007

It seems so odd that I read your blog some days, like today, and feel compelled to save the posting so I can read it again and on some dreaded future day if the cancer comes to me again. I want to be able to recall how one man managed to stay calm in the face of tremendous stress and share his insights on things that no one wants to talk about. How he didn't let fear paralyze him, how he kept living a considered life. On a daily basis, you let us in on how you feel about some aspect of this journey. And then sometimes we get a glimpse in a single posting of your big picture: the full scope of what you have been through, the insidious way the cancer has gradually found its way into more of your body. It is like being halfway through watching a horror movie and knowing that probably some pretty terrible things are still going to happen to the main character. I'm on the edge of my chair, and I don't want you to go into that dark room alone and unarmed. But that is a part of the appalling nature of having a deadly disease, there is only going forward and facing what must be faced. If cancer comes to me again, I hope I can face it with as much grace as you.

I went to work today sans wig for the first time in nine months. My hair is not yet an inch long, and I am still self-conscious about it. But reading your blog helps shore me up a bit. Thank you for sharing who you are.

Sent by Martha Anderson | 7:02 PM | 7-6-2007

Someone told me a while back they knew I'd lost Terry because of "that look in your eyes." And now that I know about it, I see it in others--my mom, my aunt, Terry's mom...it's like a "dead light" where there used to be a spark.

Sadness is now a permanent part of who we are, even if we "feel fine" otherwise. The best we can do is soldier on and keep fighting as much as we can stand to do. To do otherwise is a disservice to our loved ones who paid the price.

I'm sickened and saddened and beaten, but I WILL carry on. To do less makes a mockery of Terry's life and fight. I can't do that.

Sent by Bruce | 8:07 PM | 7-6-2007

Just read your blog today and it reminds me of all the neurologists I saw regarding my migraine headaches. They all gave me a form to fill out and asked me to rate my pain using a scale from 1 to 10. I never felt that I was giving them the right answer because I couldn't figure out what each number meant. Did a 10 mean that I felt like 10 men were hammering me in the head? Was a nine rating related to the feeling that a spear was going through my eye. I have suffered for many years and yet no one can see my pain. I always explained to my doctor that even though I looked well in person and on paper, I was in agony a good deal of the time.

Sent by Elaine | 8:23 PM | 7-6-2007

Leroy,
You made me laugh today - I'm famous for telling everyone "if it wasn't for this cancer - I'd be in great shape for my age! I still believe that - and you too - being in great shape allows us to fight harder and stronger (physically) than some others who this may be their 3rd or 4th serious medical condition. Aren't WE the lucky ones?

Food for thought - I went to see a new PCP (primary care physician) yesterday, because my last new one was becoming a dedicated hospice Dr. The one before that was on a different insurance plan. ANYWAY - she told me that I would survive this because of my ATTITUDE. She said in her 25 years of practice that she saw miracles happen before her eyes because of a patients attitude. She also saw patients die when they could have survived because of ATTITUDE. Everyone here has that - or you would be lying on the couch weeping for yourself - not checking out the other intelligent life that has serious, serious cancer.

Sent by Anita Apodaca | 10:40 PM | 7-6-2007

Except for that whole cancer thing...I'm an RN and a breast cancer survivor. I work at a major medical center with a NCI cancer hospital on site. I was at work this afternoon and the dietary people were pushing a really nice snack cart down our hallway. I commented on how good it looked and one of my coworkers complained that it was going to the cancer hospital. She sounded bitter. I pointed out to her that the patients might get nice snacks but they still have cancer. Oh yeah, she said. Id rather buy my own tasty food rather than have cancer for Pete's sake. ha

Sent by Kathy | 11:22 PM | 7-6-2007

This is my second post. It has nothing to do with what was discussed on the blog today. It is one o'clock in the morning and I am unable to sleep. I remember from your earlier blogs that you said if we ever felt the need to make a comment for no reason other than release some emotions that this was our safe place. So I decided to put into words a few of the things I was thinking about while trying to fall asleep.

Its funny how we take life for granted, especially for those of us who were fortunate to have lived a good wholesome life. Sometimes I often think that the scale has to be balanced and now its payback time for my husband and I. I know it's not a normal way to think but sometimes your emotions can have a funny way of not allowing you to think rationally.

Thank you again for this blog Leroy. I know we all are starting to sound a bit redundant with our thank you, but this is our safe place. You are one of a kind, with your own special beauty and value to life. You have given us so much and I only hope that we have given you in return.

I read a quote ( that up until now would not have meant much to me) The quote read " I have learned MUCH from my teachers, MORE from my books and MOST from my troubles.

Now I am going to try and get some sleep. Have a great weekend. Sasha

Sent by sasha | 1:21 AM | 7-7-2007

I feel just the same way. I thought I had a lot to fill out on my health forms from my allergies, high cholesterol and asthma. Little did I know, prior to 1999, how much more complicated my "health history" would become. Another tumor growth at the base of skull means that I will have to write even more on the form. After next month I will have to write 3 brain tumor surgeries, countless gamma knife radiation procedures plus 3 months of proton beam radiation. Except for that I'm in great shape!!

Samantha
Winston-Salem, NC

Sent by Samantha | 3:14 AM | 7-7-2007

After the tedium of accurately answering each question on these detailed forms, front and back, I have found that most doctors have not reviewed this information. I can tell by the tenor of our conversation that the doctor is mostly ignorant of my history. They will ask me directly for the pertinent information, and check the computer for my lab and scan reports. When I question if the doctor has seen the form, I'm told, "Oh no, that's just for your file." Now, I'm convinced that nobody reads my carefully considered answers. So, the chore of completing them is no longer important to me. I know the doctors are busy, but, talk about feeling invisible....sheesh!

Sent by E.H. | 5:36 AM | 7-7-2007

Thoughtful reading, including the postings. I especially like Sasha's comment. I am reminded of a quote, that says that all of us are capable of learning about who we REALLY are through love and happiness, but most of us can't learn that that way, we must learn through tests and difficulties. Sasha expressed this truth in her own words. To spiritually advance we need to eventually be close to death, for without it we couldn't appreciate who we really are.

I went back and read several of your older blogs. The one about your photograph was expecially thoughtful for me. You recognized that blind naive optimism in your photographed face. Despite being one of the elite, and participating in an elite occupation which brought you in real time as spectator to others death and suffering. You were then, just like alot of the people who complain about the few insensitive drs. and hospital staff with their insurance forms. They like you were around death so much BUT it wasn't your own so at the end of the day you could get away. Get out and away to an exotic vacation spot, for well deserved R&R, because you earned it, by being a spectator to others misery. I would guess you had thought that you were a much deeper and wiser person for the experience, yet, I would guess that compared to now, you were a spiritual child. The same goes, I am guessing, with many of the comments I have read which look back on their life before cancer and re ingest the memories of "the good old days". I would venture to say "THAT is a regrettable, but understandable mistake." YOU, those who make that kind of comment of yearning for the good ole days, are a much deeper wiser person now, because of your struggle than you were before.

Sent by Thomas | 9:00 AM | 7-7-2007

I've been in Houston for the wedding of my brother, which took place last night. I "hit the wall" with fatigue shortly before folks started heading home, but did pretty well. I found myself just grateful to be there, to have gotten into remission, and to still be alive to be there for my brother. The wedding was beautiful, in that Allan and Pamela are so deeply in love, and so happy with one another, that it is wonderful to see them together. As I write this, the morning after the wedding, they're dancing in the kitchen! Life is good.

Sent by Nancy K. Clark | 11:52 AM | 7-7-2007

You inspire our clients. Your expressive commentaries and those of your bloggers are the cognitive essence of psychoneuroimmunology.
A hearty thank you for what you do!

Sent by Elizabeth Sunzeri | 1:02 PM | 7-7-2007

Leroy~ I Respect & love you deeply for what you are doing with your "reaching out to others" and I admire your courage & strength.
However I must take exception to your July 5th comment that - Had you been treated some 20 or 30 years ago for the same disease and symptoms, you would probably not be around today to talk about it.
Well, I had advanced breast cancer 24 yrs ago and was told that I most likely had six months to live.
A wonderful Surgeon, six months of Chemo, and 24 yrs later, I am here to tell about it! God Bless the doctor's of those days who paid attention and cared. Do they still? Or are they so hung up with their new machines, expensive Designer drugs,& their clipboards & Forms, that they are just trying to convince us that theirs are advanced treatment for Cancer?
I had a Mini-Stroke three months ago and I can tell you that the treatment I received is nothing like the care I had as a cancer patient 24 yrs ago. I expect to die of these heart or stroke problems - not the cancer!
The Medical profession has come a long way, but it began and learned from doctors like mine years ago.

Sent by JCR | 1:42 PM | 7-7-2007

We are "given" a certain amount of time to live in this life. Every moment we are choosing. We are choosing. The cancer may or may not be a kind of choice, "ignorance of the law is no excuse". There are so many people around us, for example, choose to love us. We didn't manipulate them to make that choice, did we? Yet, many of us ask what we deserved to merit their love. What have we done, to deserve it? Now we have this new challenge, and IMO we can only now really show by our spiritual growth that we "deserve" their love. I hesitate to use this word "deserve" even though it comes quickly to my expression. However it is one aspect of our thinking. The truth is that many of those around us are like sleep-walkers or the dead compared to some of us in our more lucid moments of self understanding. This cancer is a way of waking us up, a kind of terrible blessing, that is terrible only because some of us were so spiritually dead before it happened. Would we become the same as we are now without it? How many, how many do you know who have the same spiritual insights into their own nature as many you meet with this disease?

Sent by Thomas | 9:45 PM | 7-7-2007

Dear Leroy,

I am having "one of those days". Thinking about the title of your blog today, I could very well answer to the topic, but better answer if the title read " My Life Has Been Reduced by NO Answers". It a reality at this point, and I still hope this will change but now, I feel just awful about it. I cannot stop crying, I am so lonely and afraid, I want to talk to someone who understands how I am feeling, but there is no one I can pick up the phone and talk with who knows my history and the struggles I am experiencing and that frightens me even more. I do not like to pre-judge people, but it has been my experience in the past when you have a problem that is "outside the norm", even calling an advocacy support group counsellor is a risk for rejection due to the complexity of my problem and the thought of repeating my story to a stranger is paralyzing. So here I am, back where I believe it is safe to say I am having a lousy day and no one is
going to criticize me for being honest about it.

I have been corresponding with a small group on the net for almost 9 months and started very slowly at first, I needed to know before bearing my soul to people I did not know, that my feelings could be trusted with them. I had been to groups on line before - some very negative, others that are reduced to "girl talk" and their latest love interest - not survival of this deadly disease and the REAL LIFE issues we face in order to get through the day. I felt very fortunate when I stumbled upon a group who seemed to be honest and supportive, and allowed me the time it took to be comfortable, reveal my feelings at my own pace. I managed to build some very close relationships with them, one person in particular I trusted with my deepest
thoughts and innermost feelings. In the past week or two, I have felt a scary and unfamiliar chill in the air when I write, and I can only believe it is because I continue to be unsuccessful in my quest for responsible healthcare.
I think the frustration beyond the realm of their ability to comprehend what I am going through has created this divide. It does not make it any less lonely, though.

I have never been the type who is a "taker", I am more comfortable giving of myself and helping others, but there are times, like now, when I really need assistance and have learned to give myself permission to ask for help. I do not consider it a sign of weakness any longer, but a testimony to someone's strength, when you are in real pain it takes a lot of courage to be honest. I have learned the truth of that by reading the posts of those who write on this site and learning the meaning of true heroism. I have not found a spirit of judgment here, but the love and acceptance I need most, and when I am
in this type of discomfort I only need to re-read the experiences of others who come here to help me set aside the feelings of helplessnesss by knowing there are those in more dire circumstances than mine who continue to walk with courage each day and find a sense of peace to replace their fear.

I need to feel some peace now, but this true "Dark Night of the Soul" is so consuming and I am terrified. I knew of no better place to come and share even though I would much rather be able to deliver a positive message of hope,
but instead this is one of those times when I find I need to be a "taker" and ask for your comfort. It helps just to visit here, and I thank you all for coming here and helping me walk through the fear, in hopes of reaching the other side of it.

Love, Briana

Sent by briana | 10:16 PM | 7-7-2007

Hello,
I've just started reading your blog. Thank you so much for expressing yourself and saying how most of us feel. I am 26 and was diagnosed with primary brain cancer 3/07. Wishing you the best! -Jenn

Sent by Jenn Kamel | 12:26 AM | 7-8-2007

Leroy,
Very simply, thank you! I too am in pretty good physical, mental and emotional shape - except the whole Melanoma cancer thing.

David

Sent by David | 7:54 PM | 7-8-2007

Leroy,

I also feel like you when asked how I am. "Fine except for the cancer". I actually look the picture of health. I am on my second round of chemo . My small bowel cancer has metastized to liver and pelvic mass. It seems there are not many people with small bowel cancer so there is no proven chemo, they just treat it as a colon cancer. Anybody out there with small bowel cancer?

Thanks Leroy for expressing what we sometimes can't say. God bless!

Anita

Sent by Anita Ford | 8:25 PM | 7-8-2007

Dearest Briana

Although I have never been through what you are going through (the access to treatments and such.. I am a 32 year survivor myself and was told I would not survive).... just hearing of your plight simply tears my heart out!

If only I could do something for you.. or had words of wisdom to guide you through all this.. but alas all I can do is offer you my ear to listen as you need.. my shoulder upon which to shed your fears and tears... my encouragement to continue the fight... and my support of any decisions you make along the way....

I offer my email should you desire to correspond.... rbye@canceradvocatescoalition.org

A need to ask for assistance does NOT make you a "taker".. it only makes you someone in need that deserves a friend to help as we can.... tough given distance and all... likely most of us can do little but to allow you to share without fear of rejection or judgement and to offer what support we can......

I know you are affraid... I know you are overwhelmed... I know you feel alone.... but Briana you are NO alone.. there are many here who walk along with you... lean on us for a spell here... you WILL "reach the other side"

My sincerest care and concern

Ron

Sent by Ron Bye (NH) | 9:36 PM | 7-8-2007

The following is my comment on an article printed in Sunday's L.A. Times, July 8.

Had I not researched my recurrent, aggressive breast cancer, and argued on my own behalf with my HMO to provide treatment that was originally denied me, I would have had a much poorer prognosis and diminished quality of life. My HMO had sought to save money when they offered me a minimal standard of care. This was confirmed by the outside second opinions that I obtained. By being proactive I was able to secure the treatment necessary to sustain my life. In our present health- care climate this was a difficult task.

Given my personal struggle, I was so disheartened to read the article in Sunday's L.A. Times about Dr. Prem Reddy's business model. The doctor is buying up and converting hospitals into highly profitable ventures by denying care to those who are most in need of quality medical services. While promoting his belief that healthcare is not a right of every citizen, but a privilege of the wealthy few, Dr. Reddy brings the industry to a new low in moral/ethical standards. This man's company, Prime Health Care Services, Inc., is profiting by suspending non-lucrative services such as chemotherapy and mental health care. Because of cost, he would deny chemotherapy treatments to you and to me. And, he is fast becoming one of the largest hospital owners in California, threatening to destabilize the health care system here.

To quote the article, "Patients, he said, may simply deserve only the amount of care they can afford." And, he asks, "Why is it in health care we expect to have the same?....It's an entitlement mentality. Why aren't the same people asking why everybody shouldn't be eating the same foods, or have the same clothes or same homes? Those are as essential services as healthcare." Why, indeed. This man says he is worth $300 million.

My efforts to ensure my own optimal care seem feeble when faced with a future healthcare system designed by Dr. Prem Reddy and his powerful cohorts. His bullying tactics and solely profit driven financial model is spreading just like the proverbial cancer with which we are all afflicted here.

To Dr. Reddy, each one of us is expendible. He represents the death of compassion, the obliteration of a humane society. He is the Goliath to our David.

Thanks for all you do, and for presenting this forum.

Sent by E.H. | 3:28 AM | 7-9-2007

E.H.'s comment just is unspeakable. Capitalism at its worst, all for the buck, but not the patient. This angers me the most of all the postings so far. It is indeed a Cancer spreading in our country to only focus on the rich that seem to get richer and us middle class on down get inferior help. I just feel more driven that alternative medicine such as curcumin (just found more internet studies saying curcumin can act like bone-strengthening medicine like Zometa) is important in cancer treatment and prevention. A cancer you don't get is a cancer you don't have to treat, die from. Sorry about the triteness of this phrase, but I feel strongly about this healthcare mess.

Am in process of getting all Jodi's med bills together for the attorney, very painful process to have to go through this financial disaster on top of losing her less than 4 months ago

Steve

Sent by Stephen Faulkner | 8:20 AM | 7-9-2007

Briana:
No judge here, no jury here, just fellow travelers on our journey down a difficult road. We hold your hand, we understand, we listen with open hearts and minds.
Love, Don

Sent by Don Winslow | 9:07 AM | 7-9-2007

Dearest Briana, I stand in suffering with you. As a last ditch attempt I am searching out "meaning" in the suffering itself. My pain is not avoidable but maybe the "suffering" is. Maybe if I give meaning to the suffering it will be easier to accept, and with acceptance I will release the fear of more, more suffering. Maybe the fear of more suffering is actually increasing my experience of it.

But how? How to accept suffering? I'm reading Victor Frankl, the WWII concentration camp survivor who wrote "Man's Search for Meaning". He is definately qualified to have an opinion on how suffering could have "meaning".

I hold you in my heart and mind, sending you all the relief I envision for myself.

Blessings,
Maya

Sent by Maya Ogren | 9:38 AM | 7-9-2007

Dearest Leroy,
I watched you on Ted Coppel's "Living with Cancer". My hubby was diagnosed with Chronic Lymphocytic Leukemia on April the 20th 2007 and it's supposed to be incurable. Don't fight your cancer. Read "The Secret" or watch the movie. Don't write this blog. It's keeping your mind on cancer. You can heal yourself if you focus on health not on illness!!! Live an inspired life like you always have. Your first duty is to yourself and then to others. Blessings for a healthful day!!!TRUST ME!! READ THE BOOK OR WATCH THE MOVIE! By the Law of Attraction, attract all good things to you.

Sent by Priti Saldanha | 9:43 AM | 7-9-2007

Leroy, hang in there ! I share your sentiments ! People see me and say that I look good (no hair loss from my colon cancer chemo). Sure, other than the cancer and the side effects from the treatment, I am healthy. But the question will always be in the back of our minds....what is the cancer doing and when will we know? I have not yet had the opportunity to fill out more forms, but that time will come as well. Things could be better, but they could be worse as well; guess we will all have to try and be patient as we take each day as it comes.

Sent by Lou Loggi | 10:45 AM | 7-9-2007

My Dear Friends,

Ron, Don, Maya, Bruce, Diana, etc.... I do not know what I would do without your love and encouragement. When I read your responses, I felt understood and loved, and that is what I need most now. What a gift you have so lovingly and selflessly given, and I will never doubt the truth that there are, indeed,
those who understand and sincerely care. I thank you, from the deepest recesses of my soul for helping me to feel less alone in this journey. Ron, I will be visiting your site, and thank you for sharing it again. I have written
it in my journal many times, and I will no longer hesitate to summon the courage to visit and share. Thank you so much for opening your door to me once again, with your welcome spirit.

Only those who have felt the heat of the flames can know how deeply it hurts to be ill and alone, and at this moment, thanks to all of you, my dear
friends, your warmth has helped so much to release the chill of isolation and fear.

Love, Briana

Sent by briana | 4:58 PM | 7-9-2007

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