leroy,
i am still trying to come to grips with calling myself a person with cancer. i've had some chemo treatments, lost my hair, recently had surgery, now i'm due to do more chemo and then radiation. But, still, i'm not 100 percent in acceptance that i'm a cancer patient. I'm not sure why. I feel it when people look at me differently, but its like i havent totally accepted the reality of it. maybe it scares me too much?
I wish we didnt have to wait so long for scan results. sorry you have to wait for yours leroy. I truly hope your results are great!
and also.....to Briana, i wanted to say thank you for your first blog yesterday, it touched a major chord with me, thank you.
jenn

Sent by Jenn | 7:51 AM ET | 06-01-2007

Leroy

Does a "label" really make a difference? Does it really matter what you call yourself?

You are the same person... patient... in remission... cured... waiting for the next shoe to drop... or what ever!

I am 32 years out... what does that make me? It makes me... well ME of course!

Focus on LIVING... what ever that means and for how ever long (or short) that may be!

You are one of US no matter what you call it!!

Best of luck next week... you will be in my thoughts and prayers!!

Sent by Ronald K. Bye | 8:00 AM ET | 06-01-2007

I will pray for your scans next week, Leroy. That you would have a peace walking in, no matter what the news.

Thank you for writing your story.
Heather
http://www.especiallyheather.com

Sent by Heather | 8:12 AM ET | 06-01-2007

I choose to say that I have melanoma but I am currently NED (No Evidence of Disease). Since I have had 5 recurrences, I believe that the tiny microscopic cells are lurking and waiting to reappear if my current treatment fails to seek them out and kill them.

I am also coming up on scan time...a PET/CT and a MRI of brain. It is always a nervous time but one that must be endured to check my status.

Best wishes to you Leroy for clear, clean scans. It is always good to shake hands with NED.

Blessings and prayers as always.

Sent by Al Cato | 8:18 AM ET | 06-01-2007

We are all with you on the scans, Leroy. Good vibes, prayers, you name it, are coming your way. It's just living from scan to scan some days, isn't it?

Regarding being a cancer patient. I have a brain tumor that everyone is very excited about, as it has gotten quite small and is now "inactive." The day the doctor decreed it was inactive was an odd one for me. Everyone in the office was doing the happy dance, so I knew it was good news, but I couldn't really get my arms around it. Inactive? But it's still there, albeit quite small. Still trying to understand the news, the next day I emailed my oncologist asking him if that little smidgen of tumor we could still see on the scan was like hunkered down Iraqi insurgents, just waiting for the U.S. troops to withdraw... I hope he smiled when he read it. Basically he said maybe. That's why we continue to monitor. Hmm. Not very satisfying an answer.

But when I told my brother the news, he was very excited and said, "Well, now you can say you're cancer free!" What? Well, I guess technically that's correct, as cancer by definition is fast growing.

They tell me it may be unrealistic for me to hope for that pencil-eraser-sized bit of tumor to go away. So it's like living with a time bomb inside. At least I can see the enemy, but I'm not sure if that's good or bad.

Sorry to all for the war metaphor, but it just seemed so current news in my particular case.

How do I deal? Well, I've still got three more months of chemo/avastin to go through, but then we are talking about "the end." Not of me, gratefully, but of treatment. That will be a happy day. My sweet husband is already trying to decide between France and Italy to celebrate. Either destination and I'm on board. If everything stays "inactive" it will feel like a victory when treatment ends, but I'm sure that I'll be beset by doubts and worry.

Will I still be a cancer patient? I'm sure I will still feel like a cancer patient. But I'm sure many around me will rush to embrace the idea that I'm cured. But I know I'll never really be cured of this disease. It will come back. Overall I'm healthy enough that I may live long enough to see it come back more than once. What an awful thought. Let's pray for even better treatments being available then.

Once again, a post that's way too long. Thanks for letting me get it all out here. When are your scans, Leroy, and when will you hear?

Sent by Jordis | 8:18 AM ET | 06-01-2007

Leroy, thank you and the others for your thoughtful comments each day. I hope that your scans turn out to be good news. I agree with you that we will always think of ourselves as cancer patients. Between the surgeries and the chemotherapy treatments, the 'cancer club' has some steep admission fees. Once you embark on this journey with some many others, we are joined in spirit, regardless of the labels we may give one another.
I am in the second round of my chemo for colon cancer & the oncologist says that there is no need for intermediate CAT scans, just a set one month after therapy ends. I wonder about those scans as you do. What will they show after 9 months of chemo? Even if they are clear, we will still be living with cancer. I will still be a cancer patient then, trying to offer solace to others on the journey. Thanks for listening.

Sent by Lou Loggi | 8:28 AM ET | 06-01-2007

I never know if I should tell people I HAVE cancer or I HAD cancer. I'm not even a year out from chemo--maybe my perception will change when I am further out and remain 'cancer-free'.

Sent by Michele | 8:48 AM ET | 06-01-2007

Leroy, I'm nearly a year out from ending my 'clean-up' post-liver-resection chemo. Every scan (and there have been fifteen of them), blood test, and exam since surgery last March has been clean. Dr. Personality has even said the 'cured' word a couple of times, but my local doc, like me, calls this remission.

I still call myself a cancer 'patient' and only occasionally, a cancer survivor. I'm not actually convinced I've survived cancer--but I joke that I DID survive chemo!

Three years ago, newly diagnosed in Stage IV with liver mets, my local doctor prepared me to die and the MSKCC oncologist didn't offer any additional options at first, either. If the first chemo hadn't worked (it did), there wouldn't have been any options at all. I'm not sure how you shift gears from "you're going to die, maybe within the next 6 months," to "wow, guess what? the chemo worked and the surgery worked and the cancer looks like it's gone!" Yeah--some of the docs really DID say "wow!"

Like you, I experience a brief 'luxury' period in between my 90-day appointments in NYC, where I begin to think that maybe the cancer is gone for more than a little while. BUT I also no longer trust my body...every new pain, every new ache, all the things I used to consider a normal part of my day are now alerts, things I have to follow up and track down and resolve so that I can still say that I'm NED. Like you, I still get a little scared in the days immediately prior to one of those 3000 mile checkups.

NED--no evidence of disease--doesn't mean cured. What it means is that, for today, I can still grin when my friends ask how I'm doing and shout out "I'm NORMal!" ... then give them a second to take that in before I throw them the punchline..."of course, they didn't scan my personality!" It means that I will be on 3000 mile checkups for the foreseeable future. It means Cancer World is only one blood test or scan away, if that far.

I have a friend--a co-worker from another site who I've never met--who also has Stage IV CRC, but she's 5 or 6 years out from surgery/chemo/radiation. Four weeks ago we were talking about our followups, and I asked her if it ever gets easier. And she said no, not for her--there's still that edge of worry until she gets her numbers back. Like me, she's a research clinician and she understands the numbers. Sometimes, that much knowlege isn't power--it's grist for the worries mill in the middle of the night. Some of our followups coincide--but two weeks ago, while I was listening to Dr. Personality tell me how pleased she was with my latest tests, Maria was finding out that her own Stage IV CRC had returned, as mets to her lung.

Now, as you wrote yesterday, I'm the (relatively) healthy friend, watching and waiting and trying to say the right things. I'm not sure there are ever 'right things' to say when someone has to step back into Cancer World, for any reason.

Next week will get here, with its tests, on its own schedule. I wish I could make the days before your followups easier for you; I wish I could make them easier for me; I wish I could make them easier for all of us.

Sent by Pat | 8:55 AM ET | 06-01-2007

I am the caregiver for my spouse of 39 years as he struggles first with lung cancer, brain lesions and now a spinal tumor. After watching the TV show with Mr. Sievers and Ted Koeppel, I ask myself would Bob's outcome be different if he had been treated by physicians at Johns Hopkins. Life is not fair for either patient but it may be more fair for some cancer patients than others. In any event I do wish Mr. Sievers more good days than bad, more smiles than tears, and more strength than weakness and a circle of family and friends to keep him warm/

Sent by Janet McLeod | 8:57 AM ET | 06-01-2007

I guess my choice of wording would be "I am in remission" or "I've been given a reprieve for now." It acknowledges that it may be temporary but for the time being that's good enough.

Sent by Bruce | 9:12 AM ET | 06-01-2007

Dear Leroy, My oncolgist told me there is no cure for my breast cancer. He said thet if I was run over by a bus and died, then he could definitely say I had been cured of cancer. I respectfully declined. Doc says I am cancer "free". Geez, I feel like I`ve joined the ranks of frees: sugar free, fat free, trans fat free, caffiene free, cancer free? I guess I`d rather call myself a survivor, and I must admit that term instills in me a bit of pride. Of course it doesn`t stop the stomach churning, adrenalin rushing feeling in the pit of the stomach at every lab draw and every impending oncologist visit. I hate that visceral feeling. It causes me to reschedule the doctor visits at least once, every time, and to wait until the 11th hour to have labs drawn. Just on more day, I tell myself to be cancer "free". I`ll always be a survivor, until the day I die from cancer but every three months, when it`s time for labs and the visit, I have to continue to renew my subscription to be "free". Judy

Sent by Judy Kolbaba | 9:18 AM ET | 06-01-2007

Leroy - very interesting question. I think once you've had it you are part and parcel of a unique family. I remember when I finished my chemo treatment it was very strange. Your whole life revolves around the chemo treatments, the tests, the tiredness, sickness etc... Then one day you show up for the "last" chemo treatment, they unplug you and I remember saying to the nurse, what now? Yes there are still periodic CT scans, blood tests and my colonoscopy came back clean, but for the longest time I wondered, what next? You get so involved with your oncologist and the wonderful nurses and staff and then you don't seem them anymore except occasionally. When I show up now it is a mini celebration with my oncologist and all the staff. But I see the hesitation with the staff until they hear the results are still good. Then it is like a collective sigh of relief and hugs all around. I wonder what it will be like if one day the results aren't clear.

Leroy, thank you for this blog and as long as you're still interested in doing it I will participate and appreciate you and the forum immensely. Have a good weekend.

Sent by Richard Welch | 9:21 AM ET | 06-01-2007

Dear Leroy,
Your blog has given everyone who reads it a feeling of community and of hope, so I thank you for sharing yourself with all of us! Please know that you are always in my thoughts and prayers, especially with your scans coming up. I know that this community we have will send their love and strength to you in support!
Living With Cancer....that is how I see myself now,focus on each day and try not to look ahead too far but it's hard. My Oncologist says I won't need any scans, just a yearly mammogram and will see all my physicians at 3 month intervals but I still wonder if the cancer will come back because of the "wild" type of cells I had. That's the kicker....you don't know. Most days I am up and the down days are fewer but I know that I chose the most agressive treatment option. That's all you can do and be alert for any new therapies out there.
Leroy,we are all linked by our cancer diagnoses, we celebrate each other's clear scans and hold each other when the cancer comes back. We all are fighting as hard as we can and are sometimes afraid but our love for one another shines bright. Thank you to each member of this community,you are a gift to me.
Know you are thought of with love and are sent peace, Leroy.

Sent by Judith Tynan | 9:33 AM ET | 06-01-2007

You will not be a cancer patient forever. There will be a day after several years in remission when you forget that you ever had cancer. It is a giddy feeling. You will begin to recall not the terror of cancer, but the funny stories.

Yes, there will be a day when you are not a cancer patient, but a cancer survivor, and some day after that just a regular joe.

Sent by Sylvia Cohen | 9:36 AM ET | 06-01-2007

I have to agree with you. Once you have cancer, or had cancer, you have entered the cancer world, and will never be the same. I will always go in to a scan praying and hoping for good news, and doing every thing in my power to be positive. Yet, a small part of me will always struggle with the good news, knowing there is still cancer somewhere within me, waiting to rear it's ugly head. Part of me will watch my husband, and my baby girl, solidifying them in my mind, taking them in as if I will never get another chance. Part of me will wonder what I can do to prepare them if the scan comes back with bad news. I don't think this will ever change. But I cherish my family like never before. And that will never change either.

Sent by Marcia | 9:44 AM ET | 06-01-2007

Dearet Leroy,
YES you still have a right to write this blog. You are a cancer "survior", whether it is present & being treated or
resolved. We are a "survivor" everyday we "LIVE". You will always have the knowledge about cancer & treatments, tests, good days, bad days, scared days, & the activities of daily living that go with this horrible disease.
Your blog gives hope & encouragment to a lot of people. Some you may not even know about.
I will be thinking of you nest week with your tests. I can relate to "being a little scared". I am having an EGD & colonoscopy this AM to find out if my pancreatic cancer has met. to GI tract. I already have mets to lung & spine. BUT I am hopeful the chemo treatments will resolve the nodules.
Thank you so much for the program & blogs. They are very inspiring to help us voice our problems & fears.
Jean Trobaugh
Ada, Okla

Sent by Jean Trobaugh | 9:45 AM ET | 06-01-2007

Leroy, I'm four years,ten months cancer free. The last time I went to my general practitioner it was for an overwhelming case of poison ivy. He still asked me about my cancer status and quizzed me about symptoms. So, I guess once a cancer patient always a cancer patient. And to answer your question I doesn't matter one bit that cancer patient is one of your lables. Pick another one to wear today.

I visited a friend at the hospital yesterday. When I was leaving I rode the elevator down with a woman wearing the classic chemo hair-do. Yesterday's post was staring me in the face. As we stepped off on the first floor I stopped her and let her know some of us get lucky - I did. She smiled and so did I, all the way home.

Sent by Joan Marie | 10:09 AM ET | 06-01-2007

Dear Leroy (and Patti, Ruth, Nancy Clark, et al.),
Remember at the town meeting when I said I didn't trust this reprieve that Leroy and I were (or, in his case, are) enjoying? Well, I was right not to trust it. I am still a cancer patient. Intellectually, I knew it probably wouldn???t last, but I felt so good. And I wanted it to be true!

I have been aware of a mass in my lower abdomen since March. I didn???t know what it was but it seemed softer than my tumor was. I mentioned it to my oncologist in April. He seemed unconcerned, said he???d see me in July and didn???t order any tests or scans. The thing in my belly grew. I could see it distending my tummy. I went to my gynecologist. By now, it was beginning to really bother me. It was causing pressure and discomfort. She did an exam and said, ???Yes, something is there. Let???s take a look.???

I had a scan and then an ultra sound yesterday. I have a loculated mass coming from my right ovary and going all the way to the left one. My two ovaries are indistinguishable. The doctor said ???it??? is about the size of a grapefruit. 16 cm x14 cm. I don???t know the third dimension, but that seems like a big grapefruit to me. I meet with the surgeon on Tuesday and will know more then.

I don???t know what this mass is. My CA125 was 58, elevated but not in cancer range. So it doesn???t seem to be ovarian cancer. It could be pancreatic cancer cells which have lodged in my ovary and set up housekeeping there. We really just won???t know until they take it out and have a look.

It might be something totally unrelated to my pancreatic cancer. But my fears are saying, ???You are a cancer patient! Don???t even go thinking this is something mundane!??? And my logic is telling me, ???Your fears are probably right.??? But my heart is saying, ???You have a beautiful new grandson. Stay. Maybe this is nothing. Maybe they can get it out laproscopically and you will have a short recovery. And all will be well. You will get to bake that blueberry pie and dance at your grandson???s wedding. And meet your other grandchildren as they come along. Stay.???

Sent by Stephanie Dornbrook | 10:13 AM ET | 06-01-2007

Leroy,

I don't think it matters whether you call yourself a cancer patient or not. I believe you are a person with cancer and the "person" part of it is more important.

Sent by Diana Kitch | 10:16 AM ET | 06-01-2007

Leroy I'm praying gor you!I understand where you are coming from all to well.I feel this way every time they take my blood for tumor markers mine is coming up. My Dad had inoperable lung cancer under went tx and is awaiting the results of his PET scan right now. Cancer Sucks!!!!! I have been following you for awhile now! Be well my fellow fighter!Some days are really rogher than others, this I know!!!!

Sent by Marina | 10:17 AM ET | 06-01-2007

Hi Leroy,

Perhaps I should call you Mr. Sievers as I have never been officialy introduced but as a fellow lung cancer patient I'd think you'd rather dispense with the formalities. I hope I'm right.

I'm mainly writing to you because my wife and I finally got around to watching the Ted Koppel special, Living with Cancer, we taped oh so long ago. I was amazed by our similarities. Just a little background for you: I was diagnosed with Stage IV lung cancer on Novemeber 30, 2005. For the record, I am 46 and a non-smoker with risk factors that my doctor said you can add them all up, multiply them by ten and she would still not expect to see me for another 20-30 years. My tumors were many but very small. Unfortunately for me, radiation and surgery were ruled out because of the number of tumors. Howwever, chemo was an option. I've done exceedingly well but I have my ups and downs. I'm on Round 2 now after 40 weeks of Round 1 and 6 months of a maintenance drug that did not do as well as hoped. Unlike so many others, chemo might as well be water as my side effects have always been mild and few. No nauseau, pain, etc. Just some occasional acid indegstion and diarrhea/comstipation, all of which easily controlled. Beleieve me, I know how very blessed I am for that. Many of my new-found friends cannot say the same.

With that said, the main thing that struck me was the similarities in our response to cancer including the blog. While I set up a blog, I never used it. I felt it my be a little too public. Instead I write a newsletter via e-mail evry 4-8 weeks to about 250+ friends, family,strangers I've met on planes and in malls etc. I let them now how I'm feeling, my medical status, but more importantly, what I have been doing in my life other than cancer. I think it's important for people to see me (and cancer patients in general) living their lives. My personal outlook toward cancer is almost identical to yours. I think the best phrase that sums it all up is " I have cancer. Cancer does not have me." I know your fear, your strength,your acceptance, your hopes, and your thankfulness. The thankfulness for having cancer flips people, who do not have a teminal illness, out but they do not know what we know. How could they? I was one of them and I thought I knew but now I realise I knew nothing. I watched while my 3-year old niece go through chemo, radiation, and a bone marrow transplant for leukemia. I was in the room when they cleaned the sores in her mouth which required her to hit a morphine drip in order to stand the pain all the while hating to use the drug because it made her so sick as well. I watched her make a complete recovery and cure and I still didn't really understand cancer. It's like planning on having a baby, obeying the doctor's order's while getting pregnant. going to Lamazze (sp?)class, reading all the baby care and how-to books, watching and helping all your friends and family with their babies and then the day your baby actually arrives and is put in your arms, you realize that you know absolutely nothing about raising a baby and being a parent. You can't really know either of these things without experiencing them.

I'm happy that you and I are doing so well. I will follow your blog. I'll even become your pen pal though I know you must have hundreds or even thousands by now. You ARE a cancer patient. You still are recieving medical care for your cancer. One the day comes, and I know it will, that you are left with omly the "dreaded" annual exam that everyone else despises, you can call yourself a healthy cancer survivor and you'll know longer be the cancer patient. I'm hoping we can both reach the end of that road together. If not, then I am happy that we have been journey companions for a while.

Good luck, Leroy. Good luck to the both of us and to every person fighting a terminal illness.

I want to close with the phrase I use often. Normally, there are people that would be offended by what I have to say but I find that once they are aware of the situaton, instead of chastisement, I recieve their pernmission to yell it from the rooftops.

Let's kick cancer's ass!!!!

For the rest of your non-patient readers, if you don't like my vulgar langauge, try having cancer!

Sincerely and with lots of love,

Eric

P.S. You can see why I write a newsletter. Once I get going, it can be hard to stop. Can you believe I hate to write?! My fifth-grade teacher always told me that I had the talent and inclination. For me, it's just getting started and the physical slowness with which I write or type. If only I could transfer my thoughts directly to the paper/screen without any physical motion to slow me down!

Sent by Eric Bell | 10:35 AM ET | 06-01-2007

I believe that from the moment you first hear the words "you have cancer" you are a survivor. So maybe you don't have to say you are a patient, you can say you are a survivor. You have survived the treatments, the tests, the anxieties. You are a survivor!

Sent by Kristin | 10:38 AM ET | 06-01-2007

Leroy, My husband finished up treatment for Hodgkins Disease 5 years ago, and has been doing regular blood tests and scans since then. Originally 5 years was considered the cure. Now, his radiation onc. has told him she wants to watch him until ten years go by. Considering that, I'd say you are most definitely still considered a cancer patient. As long as you need tests etc. to eliminate fears of recurrance, you will go through the same thoughts each time.

I am however, considered terminal with small cell lung cancer with brain mets. I had Gamma Knife radiation in Jan. to kill off one brain tumor. Now, June 1, an MRI shows I have a dozen pea sized tumors in my brain. So this afternoon I will be given my next options. I can only hope there IS another option. I WANT to be like you, and question whether I am still a cancer patient. But I know that isn't going to happen. My goal is just to live out this summer, with my mind intact, and breathing without help.

You are saying things here that everyone thinks, but rarely does anyone express these thoughts. I know my husband thinks about his cancer someday coming back to bite him. I just thank my lucky stars that he is here for me now, and is my absolute rock.

Sent by Jill Schaudt | 10:47 AM ET | 06-01-2007

Mr. Siever my heart goes out to you and I send prayers your way to help with the energy and strength to get thru the new round of scans.
As you say being told you have cancer is scary and a very sad thing but it is still a life worth living. It is so difficult to pull all of these swirling thoughts into one positive thought, or any collective thought at all sometimes, things seem to change, our emotions get flighty.
I too am going back for a scan next week on 3 spots they've found on my liver from breast cancer and I'm going to think positive they were wrong, the 3 spots weren't really there, I could be fooling myself too but I have to have hope as we all do.
My very best to you in the coming days.

Sent by Pam | 11:02 AM ET | 06-01-2007

Leroy,
I have been reading your blogs for several weeks and believe I have read them all. On the strength of yours, I started my own and now I am really sorry that I did so. Because I told everyone I knew about my blog and now I am thinking, "I don't want some people to be reading this stuff, people like children, spouse(s), neighbors, etc. So I am in a dilemma of whether to continue or not. When I was seeking information for myself online, I noticed some of the websites asked me to register and there were provisions for my making comments, which may be more appropos. When I went for IMRI treatment yesterday, I talked with a woman who's husband was taken before me. I then realized that my blog would be a lot more satisfying if only people like you and me and she and her husband read it. I wonder if you have that feeling. In regard to your blog today, I have never (I have only been this way for six months) thought of myself that way. I have picked up what seems the current appelation: "cancer survivor." Thank you for helping me so much.

Sent by John | 11:05 AM ET | 06-01-2007

"But what will that make me?" It makes you Leroy Sievers, veteran of many conflicts, including cancer. Leroy, the wise, fallible, fierce-hearted presence with deeper roots and knowledge than you had before this journey. Semantics has its place, and I know you will sort out the terms you feel fit each leg of the trek. But at heart, you are and will always be (in person, and ultimately in legacy) more than any label can contain.

Sent by Sarah | 11:11 AM ET | 06-01-2007

Once diagnosed, we all enter this Cancer World and are given our titles: "Patient". I don't think that ever changes, regardless of how many trips we make back to it. We still bear the merit badges like so many Boy Scouts, of wisdom gained, of pains overcome. No, it's not all about "cancer was great for me", by any means; I'd love to be my naive self and enjoying my 40s like my friends, their mortalities looming a bit closer but still at a comfortable distance. I think unfortunately, even with NED, and the few "cures" we're always patients. Because we live our lives differently, whether it's going to doctors just a few times a year, or more. But mostly because our view of life has changed, and as much as we wish it had not, we accept, and try to make the most of it.

Sent by Laura Buckley | 11:20 AM ET | 06-01-2007

I know exactly what to call you, and others with cancer: You are a courageous hero. I have a brother who was told he has at best 6 months to live (pancreatic cancer). This was 2 months ago. As his primary caregiver, I do my best to take some of my brother's lonliness away, and to act as a sounding board for his thoughts. I find strength and encouragement from your blog. I find a sense of comfort from your words, and the words of others who reply to your posts. Peace and well being to you Leroy. We've got to find a cure.

Sent by Brian P | 11:52 AM ET | 06-01-2007

I vote that you are one healthy dude....an excellent writer an incredible human being, who has the insight from his own experience of cancer who will always have the right to write about cancer and any other topic you may choose! It is not only this blog that has brought you so dear to our hearts! You have touched on subjects and brought them to us with such compassion.....enjoy your health in this moment because this moment is what we have. We will all be with you next week...prayers and all.

Sent by Kay | 11:53 AM ET | 06-01-2007

To Stephanie Dornbrook: I am so sad that you have this new development to deal with!!! I saw you at the 'Town Meeting' and feel like I know you. I hope it helps you a little bit to know you have touched others' hearts and lives, and we care about you.

Leroy: Scans! UGH!!!! The cycle of fear we go through is agony. It builds up the week before the scan, then festers and grows after the procedure before learning the results. The self talk we do, admonishing ourselves not to 'borrow trouble' to 'think positively' to 'brace for the worst'...and on and on. YeeGads. It's awful.
I have all my fingers and toes crossed for your scan to be clear!!! If it is, please do NOT stop blogging; you'll always be an honorary member of this club....we all hope you are a HEALTHY member for a long, long, long time!

Sent by Sandra Shuler | 11:57 AM ET | 06-01-2007

I'm in a similar situation Leroy. I'm at NED stage; no evidence of disease. I talked with my oncologist this week, and he said that he goes through a push-pull with patients. He has to order tests to "find things", but that he doesn't really want to know about trouble, but he has to look for it. I agree with him, and gladly go through the CT scans and PET scans, and am fortunate to be able to keep worry about them in check. I don't need to muck up the NED time by worrying about when it'll end. I feel that this time is a "golden age" for me. I don't know how long this will last, nor what will happen to me when it ends. How bad will it get? How long will it last? I'm not going crazy in the "squeezing every drop out of life" dept. I'm not that type, but I'm cognizant of the fact that I shouldn't waste this time of feeling pretty well, in spite of all of the residual problems from the TRAM recon surgery which has me back in PT for the FIFTH time. I've changed jobs, and today is my last day at a job which no longer serves me, and I'm starting a new job on Monday. I've started a little jewelry making business, and I'm having fun doing that. I'm enjoying getting stronger with water aerobics and Pilates work at my local health club. I'm truly hopeful to see Paris again one day. As we've all said, having cancer causes us to understand in a deeper way than was available to us before that none of us are permanent.
To the insurance companies and our oncologists, we're cancer patients. I guess we have to work out for ourselves if we need to carry that label between times.

Sent by Nancy K. Clark | 12:21 PM ET | 06-01-2007

I'm the mother/caregiver of a cancer survivor - DX almost 1 yr ago. Major institution we chose made the comment - 'we must eradicate' this. Treatment was intense. He is now close to re-entering' the 'real world'. Also fraught w/problems.

From my perspective ONLY - I've been terrified of the C word since childhood & am now a Sr. However; having been so close to this - I think I would handle it differently now than if I had been the person DX'd. But... I've not been tested w/this particular life trauma myself. My brother's wife (he had lung cancer) said she feels the same if it were her. As a beautician she donates her time to CX patients.

Very close friends of ours both had C & altho I know they deal w/repercussions I NEVER thought of them as C patients. Because they went out of town for treatment & we didn't see them - because it was caught early ????? Don't know. I just know I don't even think about it in their case. Another friend has been a 25 yr survivor (didn't know him when orig. DX'd). My son - has done remarkably well from a physical pov, but emotionally....!!!!! Believe me I can appreciate what everyone goes though.

This brings me to how I appreciate this site - & wonder how you personally manage to continue it as you go through your own personal trauma. I can only wish you the best w/your scans.

I may have no right to say this, but how can one be a survivor for so many years & worry on a continual basis? That seems to remove the 'life' out of a person. Not that I can't appreciate the feeling, but truly we have experienced so many ways to get to the end of life, that I think at some point it has to take a back seat - otherwise it destroys more than the C itself.

Thank you for this forum.

Joan P

Sent by Joan P | 12:29 PM ET | 06-01-2007

Leroy, will you please get out of my head! Seems like every morning after my meditative walk with the dog, I come home to your blog and dang if you're not expressing what I've been ruminating over for 45 minutes.

Okay, I could be projecting here, but Leroy, I don't think the question that you're really asking this morning is "When do I stop being a cancer patient?" I think it's "When can I stop being scared?"

The whole labels thing is another question entirely and has to do with the outside. This morning, you're expressing the internal fear and loathing that we all live with -- that ebbs and flows with the next meeting with the docs, the next test, the next nearing of a milestone of survival.

Here's where the potential projection comes in -- I just got my PET/CT scan results back on Thursday. According to the scan, I'm clean as a whistle from stem to stern. But then, so were the margins after the surgery in 2006 to remove the first tumor and so were the margins after the surgery 13 months later to remove the second one.

Am I buying it? That I'm "cancer-free"? Nope. Cancer me once, shame on you; cancer me twice and I'll go ahead and do the radical radiation/chemo that I've been in fear of all my adult life later this month. Those microscopic cells are just too dang wiley. They can't be trusted.

So what does all this make me? If you want to be technical about it, NED, Survivor and Patient all at the same time. At least, that's what I came to on my walk this morning about my "label".

But I realized as I was picking up the second fragrant poop this morning is that what I really am is -- scared. That's my status, not my label. And it's probably not going to change for the rest of my life.

Bless you, Leroy, for expressing once again, with authenticity and grace, what's inside of my head and the heads of so many others. I'm crossing all my digits, rubbing my rabbit's foot, and burning a joss stick for clean scans next week.

Sent by Nancie | 12:37 PM ET | 06-01-2007

LeRoy

It is my opinion once a cancer patient always a cancer patient because you are living from scan to scan. At anytime it could rear its ugly head again.

Yes it made me excited that when after my first surgery to remove 1/3 of my tongue that all margins were clear and nothing was evident in the lymph nodes. However three months later it reappeared again in the scar tissue. Then I had to go through the chemo, radiation, brachytherapy, and hyperthermia. I still have the chance of losing more of my tongue and lymph nodes.

So I say again, once a cancer patient, always a cancer patient. Take care and good look on the results of your scans.

Sent by clark | 12:38 PM ET | 06-01-2007

Leroy, as long as your mind is sending out electrical impulses, the MONSTER WILL BE WITH YOU. It is not a bad thought to have, you know you have corraled the beast. What you have to worry with is the next challenge. The treatments you inflicted on your body, could cause future problems. Listen to your body, take a keen interest in your follow up physicals.
A physical therapist taught me an important goal.
You do not try to do better than you did before your illness, you try to do better than you did yesterday.

ENJOY EVERYDAY!!!

Sent by Sam Means | 12:44 PM ET | 06-01-2007

"Tumor markers" drive me nuts ! I watch them so anxiously. They usually are a good measure of what cancer is doing in my body, but four years ago when I did Taxol for a return of mets to my liver, and my CT and PET scans showed clear for many many months in a row, my tumor markers went up up up, not down as one would expect. Then, I was told to ignore them - but that is hard. Only when treatment with Taxol ended (and I then enjoyed a 3 year remission) did the tumor markers go down. Weird.

Sent by Nancy | 12:56 PM ET | 06-01-2007

Very best of luck with the scans next week!! Will be thinking of you and sending positive thoughts your way!

Sent by Sandy Lathe | 1:04 PM ET | 06-01-2007

Sarah wrote to Leroy..."But at heart, you are and will always be (in person, and ultimately in legacy) more than any label can contain."

That was so beautifully expressed Sarah. Very true.

Sent by Vicky (NY) | 1:34 PM ET | 06-01-2007

From the minute I was diagnosed I considered myself a cancer survivor. This label never changes (until I'm not around to worry about labels). I'm very proud of this label. You should be too.

Sent by Scott Johnston | 2:03 PM ET | 06-01-2007

My son, now 6 years old, have been off treatment for 4 years now. We tried to forget about the nightmare, but the quarterly check-ups, the hearing lost (due to chemo), the easily upset stomach (lost of gall bladder), etc. are constant reminders. I feel overly protective of him and sometimes feel extremely guilty about disciplining him since I almost lost him once. The question of reoccurence is always in the back of my mind. Everytime he has an ache, a bruise, upset stomach, etc. normal childhood ailments, would bring the thought of reoccurrence. I am getting better now at not "freaking out". I used to remember his oncologies office and cell phone number by hard. I have to say I had to look up the number last time when I made the appt for the quarterly check-up. An improvement for me.....

Leroy, once a cancer patient, forever a cancer patient. Everytime I fill out a health information form for school/sports/camp, as unpleasant as it is, I always have to list cancer as a previous ailment.

GOOD LUCK on your scan next week. I'll be anxiously waiting to read your blog.

Sent by grace | 2:59 PM ET | 06-01-2007

Hi Leroy,
Just about to start my "wait" for the next scans. If clean, these will be the last for a year. Hearing that my Uncle's cancer has returned, and is very aggressive does not leave me with high confidence. But life goes on.
Here's hoping we can both stand the wait and come out the other side.

Sent by Brit | 3:33 PM ET | 06-01-2007

Leroy. I am kind of in the same spot. I just got back from UCSF and they feel right now I am tumor free. But then they are quick to remind me that with Glioblastomas there is always that one cell. Like I need to be reminded... I had a friend mail me today saying congrats on being cancer free!! Just back to where it is not understood. I myself am not a fan of the word patient. Survivor? warrior? I don't know. The two I use which always seem to make me laugh but make me comfortable with it are Tumor head or lab rat.
I get scans every two months. And it always seems to make time stand still. But if we worry about it or keep going on about our life the same outcome will happen. So why worry... I will keep you in my prayers always and wish you the calm to help you through this part of the journey..

Sent by Christine VanHoose | 3:54 PM ET | 06-01-2007

Hey Leroy.
I remember being diagnoised in Sept of 97. From my first surgery to my first appointment with my first oncologist it was pretty hard. The first oncologist gave me three months. I was in shock but something told me to get a second opinion with a doctor who specialized in lymphoma.(I am thankful I stayed with the second doctor) So thats exactly what I did. His thought was lets kick this stuff back together. We had a long talk due to having stage 4 with bone marrow involvement.
One thing I learned that day. Was that my cancer was a chronic disease and it would come back again in the future. My oncologist gave me a gift by refering to it as something simalar to heart disease and diabetes..something we all have to constantly be on top of.
It was that day I became a survivor no turning back.He offered me the hope I needed to move forward.
I will always be a patient..that looks after my health due to cancer. My preference is to be looked at as a survivor.
I to am waiting for test results. For me thats the hardest part of the whole cancer experience. Waiting& not knowing. I hate it , but I try to keep busy durning this time.
No matter what happens life goes on. And I do not want to miss a single bit off it.
THoughts and PRayers Leroy

Sent by Kerry | 4:13 PM ET | 06-01-2007

Dear Leroy, my prayers that your next round of scans are clean. I commiserate with your wrestling with the cancer terms (survivor, patient, former patient etc.) as I've been in remission for leukemia (AML) since last November. My onocologist tells me I'm cured "for now" so like you, am I still a patient? I feel that I still am and will be until I've had several years living in remission. I've had 6 bone marrow biopsies, and except for the 1st, they've been clean (my term) and the genetic marker for my particular leukemia has not shown up. This should be great news but I still feel that the disease will never go away. This is the unease I have to live with. But let's relish our victories when we do get good news. I'm praying you'll get some next week!

Sent by Dorothy | 4:21 PM ET | 06-01-2007

To Stephanie Dornbrook--I am so sorry. I know it probably won't help, but I gonna say it anyway....Hang in there and I'm keeping my fingers cross for you. Good luck on Tuesday and please keep us posted.

Sent by grace | 4:57 PM ET | 06-01-2007

My comment for yesterday didn't get in for some reason. I just wanted to say that some friends can't handle the cancer thing. Others seem to know just the right thing to say. I found myself telling other cancer patients (that I am taking care of as a nurse) that I have it to as it creates a bond. Maybe it would be more positive to say that I HAD cancer,it's in remission or whatever but the fact is that cancer is considered a chronic disease so I think I will always be a cancer patient no matter what stage I am in. BEST WISHES Leroy for results of your tests. I am scared too because get a CAT scan next week and I have been coughing. I remain positive thinking it's just from the smoke of all the fires we have had here in FL. Please keep writing, we all need you.

Sent by Vicki (FL) | 6:27 PM ET | 06-01-2007

That's fantastic question to discuss, I wonder about it all of the time. Before my surgery for cancer I told relatively few people, just a few close friends and co-workers.

Now that I am 3 months post-surgery and my life is getting mostly back to normal, I run into old friends or co-workers from previous projects. I'm now more open about telling my story, I'm pretty comfortable telling it in the past tense: I was diagnosed in February, had surgery in March, scans are looking good, doctors are optimistic.

The one area where I get stuck is exactly your question. Do I tell people that I "have" cancer or that I "had" cancer. I usually go with "had cancer", I would like to frame the story in an optimistic light and not burden the old friend. I just hope that I'm not being too optimistic...

Sent by Jeff | 6:43 PM ET | 06-01-2007

After chemo and surgery I am officially disease-free but I will always be a cancer *something.* Maybe not a patient, maybe I don't care for the word survivor, but cancer and I are inextricably bound together. It has changed me, turned me inside out, made me examine all my values. It forces me, standing at the edge of all I know, to live with integrity. There should be a term for those of us who have been Changed by Cancer. I will be looking over my shoulder for many years to come. One model has me with a 40% chance of recurrence in the form of mets. Every single day of my life is full of a deep joy, a sense of rightness and purpose. I am not a religious woman but there certainly are more things on heaven and earth...and I am so aware of the *bigness* of this universe.

Sent by Alycia Keating | 7:27 PM ET | 06-01-2007

Dear Leroy,

With breast cancer, they say you are cured when you die of something else. So, I still consider myself living with cancer, not cured. That doesn't make me any less of a survivor, (I still hate that word!). It doesn't change my attitude about life or how I live it. My 18-year-old daughter hates it when I say I have breast cancer. "Mom, you DO NOT have cancer, now!" I try to humor her because I know that it makes her world so much easier, but deep inside I know that while maybe not active, the cancer is still there. It may activate again in my lifetime or not. I'm hoping not.

I'll be thinking of you as you go through all the tests next week. Whatever the results, you know that you have the will, the strength and the courage to deal with them and you will make it o.k.

All my best,
Mo

Sent by Mo Spikes | 8:04 PM ET | 06-01-2007

Dear Leroy - Thank you for such thoughtful contributions. I hope your scans go well and that you gain strength and feel better. Like you, sometimes I fear the other shoe will drop. But, I prefer to think of myself as a survivor, even when undergoing treatment, because it puts my focus on living and thriving. Good luck with your tests.

Sent by Lauren | 8:05 PM ET | 06-01-2007

Leroy, I'm praying for your scans to show NED next week. As for what to call yourself, I have the same problem. I've been told that to be a survivor of ovarian cancer I need to make 5 years past my last chemo treatment. I have a year and 2 months to go for that. All of my exams and blood tests show no sign of the disease at this time. My CA125 has gone down to a 4 from close to 200 at time of the first surgery. I feel good. I run into the problem when I am filling out forms that ask me if my health is excellent, good, fair, or poor. How do I answer that?! I think I am afraid to say I'm a survivor yet because I don't want to jinx myself.

Stephanie, please check with a gyn/oncologist if you haven't yet. The CA125 of 58 isn't not extremely elevated; but at the Program in Women's Oncology in Providence RI where I have been treated they get concerned at any reading over 21.
My prayers are with you during this latest flare-up.

Sent by Sondra Scott | 8:38 PM ET | 06-01-2007

Semantics can have personal meanings. When I was undergoing treatment (surgery, chemo, radiation) I was a patient. After that I became a survivor--although when I have a needle biopsy (I've had two so far) I become a very impatient patient, fearful and annoyed. Only twice in my life has a raw nerve been touched: once by a dentist exploring an incomplete root canal, and more recently in the course of a needle biopsy. I will reach the five-year marker in 2008, but I understand that does not have the same meaning in the case of breast cancer. I will be allowed again to donate blood, however.

Being a patient is passive: it is either temporary (in my case so far) or recurrent. Although I respect those who see themselves as fighting cancer, I don't care for war vocabulary. Living with cancer suggests perhaps too much intimacy with the unwelcome colonizer.

I was 63 when my cancer was detected, the most common age for breast cancer. I didn't have the concerns of a younger woman. My children were grown, I was past menopause. I had retired at 60, so I had the luxury of not working, as well as the luxury of very good, if expensive, health insurance. For all of this I am grateful.

At that age I was maybe at the beginning of knowing that death is inevitable, that "we were born dying" [chapter title in Boundaries of the Soul, by June Singer], and to have some curiosity about how I will die. Although my beliefs do not include prayer or an afterlife, I hope for a good death. Not sudden (that infamous bus) or anguished (in pain) or beyond awareness (severe dementia), but a death that allows me to say goodbye to people I love, and places, and just life, which is all the consciousness I will ever know. I have seen at least one gentle death, a letting go, not because he didn't want life but because it was time.

I will have no obituary, but if I did, it would not refer to a "courageous fight" or "going to a better place." I will not have "passed away" but DIED. Death is something all animals and plants are entitled to.

Sent by Joan | 9:13 PM ET | 06-01-2007

I'm also set up for annual tests next week I try to stay positive but I cry almost every time I read your blog or other people comments.the fear is so close to the surface.
I'm praying for you and me thats all we can do

Sent by sherry snow | 9:46 PM ET | 06-01-2007

Hi Leroy,
As for me, I still say, "I have cancer" even though there is no eveidence to prove it. But it was in lymph nodes, and somehow, I feel the little cells are still lurking there, just biding their time.

I wish you good news on the scans and a calm mind in the meantime.

Stephanie, I'm so sorry to hear your scary news. I'm hoping it's something completely unrelated to cancer. When will you have the surgery? Please keep us posted. I feel as if I know you after all these months on Leroy's blog and after seeing you on the Discovery Channel Living with Cancer program.

Sent by Doris | 11:08 PM ET | 06-01-2007

Dear Leroy --- I posted my first comment about a month ago. I had just learned I had cancer and had my left kidney removed. I had a tough time watching the special with Ted Koppel and promised I would watch the rest. I did this evening. What was remarkable is that when you said something, I would pause the show and tell my wife "something else." We would contiue to watch and the next words out of your mouth were identical to what I just told my wife. I felt good! Here I am a mere 6 weeks post op and I feel like a veteran. This is my lead in to the four thoughts I wanted to share.

First, despite so many differences, people with cancer seem to step up to two difficult situations. One, while they forge ahead with differing degrees of cancer, hope, expections, treatments and reality, they (we!) quickly end up taking care of others emotionally. It was odd at first, after all, I have/had cancer (see second point) and you would think the conversation would be about me. It's not. Much like Lance Armstrong said, people want to be heard and recognized. For some reason, talking to me has given them the comfort that I will listen to them and understand. I'm no therapist, but I can tell you that most of my talks with friends end with them thanking me for listening to them. At which point, the apologize for not focusing on my problem. I am gracious to them, tell them not to worry and that I am here for them. Don't ask me how or why, but we both feel better.

Second, I'm cancer free, at least technically. I can't seem to put a handle on the fact that I still need post op therapy and that my chances of reoccurance are 50/50. Initial indications were that my form of cancer was such a low grade that surgery would be a cure. Results were not quite that good. So, I volunteered for the only treatment available to me, a clinical trial. I found myself doing this, first because I wanted to help. I was stunned at my thought process in light of my 50/50 chances of getting cancer within the next year. My second reason for volunteering was and is the hope that it will help me. While I've never been a selfish person, I am puzzled by this, yet still feel the same way.

Third, much like my first item and consistent with entries on your blog, as well as discussed on the show, my wife is having a much more difficult time with this than me. Even before I saw the special and read the blog, I had dealt with a lot of issues and made sure I kept my sense of humor. It has helped me and my friends and family, except for my wife. She can't seem to move beyond fear of reoccurance and the impact that will have on her and our two children. It is weird to be told, in a loving sort of way, "don't you get cancer again, I can't go throught this one more time." Much like my second thought above, while I have the disease, I have become the caretaker. Again, I'm puzzled, but fine. I just wish I knew a way to ease her mind.

It will be tough. I'm 55 and in the past 3 years we have been to several funerals for friends who were younger than me, who died of cancer, and most were men whose families remained intact (no divorces, blended families and the like). I think she is so affraid of that funeral and life that she can't move on. I'm trying to help and for some reason it is not difficult. It is frustrating, but not difficult for me.

I wish I could do more for others. For now, I must take care of myself, help my family and be proud that my little contribution will be to participate in a clinical trial.

Finally, being currently cancer free, but knowing I'll be in treatment for the next year and that I'm in a 50/50 situation, my conversations with others are uncomfortable in one sense. I almost feel guilty telling people what happened because part of me thinks this is over and I shouldn't make them feel bad thinking I had or have cancer. I've dealt with the conversation difficulties you discussed. What to say, how to answer, what do they know, etc. and I'm OK with trying to go with the flow, whatever it is. But I just can't help but feel guilty when I talk about it. On the one hand, I haven't been dealt a death sentence. On the other hand, my I know too well that my "cancer free" state may change with my next visit to the doctor. I don't want pity, yet I don't want the guilt I feel talking about me and cancer.

Forgive me, I'm not articulating this too well, so I'll give it another shot. I can't say I have cancer, because I don't. However, I know the reality is that I well may, either tomorrow or a year from now, have cancer again. But what a crappy thing to say. It's too negative and I feel like I'm trying to take advantage of a condition that does not exist - even though it may.

Despite my great attitude with this, I'm having trouble with this ambigious state of cancer v. non-cancer. Also, I don't want to tout the "cancer free" state and get my hopes up too much. I have learned that you can get cancer out of no where and that once you have it, even if you come out of it, you are a cancer survivor. It is a differnt life.

THANK YOU FOR CREATING THIS FORUM. I HAVE FELT A KINDRED SPIRIT, GREATER HOPE AND MUCH MORE STRENGTH THROUGH YOUR BLOG. I SENSE THAT OTHERS HAVE TOO.

Sincerely, Steve Albright, Calabasas, CA.

Sent by Steve Albright | 6:27 AM ET | 06-02-2007

Leroy - I am so glad that you get to dance with NED and glad that you got the chance to enjoy your recent vacation in Hawaii. I want to dance with NED too, but am waiting for my marker numbers and another scan on Wednesday to see if I'm getting any closer. It's 3:00 in the morning and I'm still buzzed on decadron from my treatment yesterday, and this seems like as good a time as any to be awake and try not worry about the marker numbers and scans, but damn it's hard when you can't sleep.

To Stephanie Dornbrook - like so many others who saw you on Living with Cancer, I think you were great. I'll be pulling for you and hope that this turns out to be just another bump on the cancer roller coaster that you'll get past. Good luck.

Sent by Bob Maimone | 6:32 AM ET | 06-02-2007

Dear Leroy and Friends,
I am desperate for some help. I cannot say whether or not if I have Cancer, because I was misdiagnosed and have been trying for 16 months to find someone to help me find out why I am so ill and if I still have Breast Cancer that is active, has it gone to another part of my body, just what is wrong?
I have written before and said I have had a difficult time getting doctors to look at my chart in its entirity because I am a complicated patient, but, I still deserve good health care and the right to know if the cancer was missed in the first surgery, as the surgeon has said she believes is the case, or just what is going on. I am insured by Medicare and Medicaid and have never had any problems with insurance payments, so I am told that is not the problem.

Does anyone know who I can call, I have been in contact with American Cancer Society and many of the other cancer organizations, and everyone referes me back to the oncologist.
I need an advocate, does anyone know how to go about getting one to help me navigate the system. I am getting weaker and I am unsure how much longer I can continue to try to do this on my own. I have no support at home.
I hate to keep asking, but I am desperate and sick.

briana

Sent by briana | 7:10 AM ET | 06-02-2007

Good morning folks...I have been following this blog since the first of the year, and came across an article in the Milwaukee Journal Sentinal online newspaper that somewhat addresses many of your concerns re: survivorship...I hope my attempt to put the link in is successful...bear with me...http://www.jsonline.com/story/index.aspx?id=613777

Sent by Ray | 7:46 AM ET | 06-02-2007

That is a question that has been lurking in my mind since day 1. Do I ever stop being a cancer patient? I see doctors every 3-4 months for follow-up because my case was so unusual. Those days, I am a cancer patient; but most days I am Jack's mom, Ian's wife, and a cancer advocate. Every day, I am a Survivor...and you are too, Leroy.

Sent by Cynthia | 8:07 AM ET | 06-02-2007

Lance Armstrong, in his book (pg 268) said, "I will always carry the lesson of cancer with me, and feel that I'm a member of the cancer community. I believe I have an obligation to make something better out of my life than before, and to help my fellow human beings who are dealing with the disease."
I agree with Lance and, after 8 years in remission, I know I'm always a part of the cancer community whatever my status. You are too, Leroy, and you are doing something that makes life better for your fellow members and friends in the cancer community....whether you are a patient or not.

Sent by Janet | 8:19 AM ET | 06-02-2007

Hi Leroy,

I hate to admit it, but your very last sentence made me sign with relief. "I am a little scared" is commonly coming out of my mouth. I am scared, hopeful, terrified, doubtful and skeptic. I go for another round of rituxan maintenance in about a week and I am scared. I am noticing symptoms again that are troublesome to me and I can't help but wonder is this just my imagination working overtime?

I am a cancer patient but I like the word survivor better, because one day at a time I AM surviving this wretched disease. Some days it's a moment at a time, others it's a day at a time, but I am doing it.

If I choose a label, I choose survivor today. Good Luck to you.

Sent by Beth Hime | 9:48 AM ET | 06-02-2007

Leroy,

We're ALWAYS scared before another set of scans. Yes, I've been in remission for 18 months, but I'm still a cancer patient, have been for 7 years, and always will be. Cancer changed my life in every way -- big and small. I'll never be the same as I was before my original diagnosis. Whether the changes are for the better remains to be seen. So far, all major life changes have turned out to be for the best.

To Steve: Your wife could use some professional counseling. Usually women are much more willing to to ask for help. She seems to be stuck in her fear and she needs to move on for the whole family's sake.

Sue

Sent by Sue | 10:10 AM ET | 06-02-2007

Dear Leroy-

I had two thoughts when I read your message.

I've been struggling with inflammatory breast cancer followed by a high grade parotid gland tumor. I have thought about your question often for myself. Do I refer to myself as having cancer, being in remission, managing my cancer?? I've come to the understanding that once you've had cancer, you always have cancer even though you no longer need to worry.

What I mean to say is that, once you have cancer you "get it." You, I and all of us will be and are a valuable resource to those newly diagnosed with or without our cancer. We can provide the ear that only someone who has had cancer and gone through the toxic barrage can provide. In a way, I am proud to say I've had or I have cancer.
I have two small girls and I want them to always remember their mom did not crumble in the face of fear. I want them to learn how to throw their shoulders back and face the storm. I want them to see that their mom took on the challenge, filled her arsenal with every possible bit of ammunition and marched forward. (So many war metaphors - sorry.) So, I don't believe it's important what we choose to say, I just hope we all open up and embrace the wisdom of our experience and share it with those who need it. I'm always amazed when I meet people who whisper to me, "I had cancer, but I don't want people to know."

My second thought/question, have you tried anti-angiogenesis drugs? I added avastin to my chemo even though my doc was reluctant because there wasn't any data to support my desire. After my second round, an NIH study came out supporting Avastin with inflammatory breast cancer. When they did my surgery - post chemo - my 5cm tumor was no where to be found. I still had some in my lymphnodes, but the main tumor had been destroyed. I know they use it more often with great success in Europe, but I don't really know the restrictions in terms of what it works on and what it doesn't. Just a thought.

Practice your deep breathing and visualize your body free of cancer. You will be there. All my best to you.

Kathy Bero

Sent by kathy bero | 10:51 AM ET | 06-02-2007

Leroy,

It doesn't really matter what you call yourself. But I think of you, and all of us who've gone through treatment and are currently in "scan mode" as cancer survivors.

Sent by Melinda Thomas | 12:22 PM ET | 06-02-2007

Leroy, this is a tough one, and you are not alone in wrestling with it. I hope and pray your scans come back all clear next week, and in the best of all possible worlds you would never have to deal with a recurrence of cancer again.
In the Living with Cancer program, Lance Armstrong consistently referred to himself as a "cancer survivor"; he said several times that the cancer might come back, the cancer would probably be what ultimately takes his life, but that he is, and will always be, a "cancer survivor". I guess I like that because, while the term "cancer patient" implies we are always sick at some level, the term "cancer survivor" states that, at this time, and for as long as we are alive and still dealing with all the issues of living with cancer, we _are_ _alive._
For me, I know that cancer has changed my life and that I will never be the same, even if (and the chances are slim) I never have a recurrence. In a lot of ways, cancer has come to define who I am now, and how I approach life and what I want to do with my life. And that is not a bad thing; I think the changes I've undergone have been, for the most part, quite positive. But it _has_ irrevocably changed the way I look at things, and the way my husband and family and friends look at things, and so I guess that I, like Lance, choose to call myself a cancer survivor rather than a patient, at this time.
That being said: when I finished chemo in Aug. '06, my CA-125 was at 10, which was very good. But it has been creeping up ever since, and now I am having symptoms again, almost constantly, that are the same as those I was experiencing just prior to my diagnosis. With Ovarian Cancer stage 3c, recurrence is pretty much expected, but we were hoping for a longer period of remission. Now my Gyn. Onc. is concerned, and has ordered a complete round of scans for me in June; obviously the blood work, coupled with the symptoms, is worrisome. So I know just what you mean; waiting for the scans, then waiting for the results, not knowing what those will be...it's hard to wait, but at least it's not as hard as it was before we _knew_ I had cancer. But will I be a cancer _patient_ again after the results are in?
I wish you all the best next week, and look forward to hearing what your results are. May they be as clear as the air on a fresh spring morning in the San Juan Islands!

Sent by Katherine from San Juan Island | 12:32 PM ET | 06-02-2007

Thank you Lou and Bonita for elaborating. You give me strength.

Sent by Bob A. | 12:51 PM ET | 06-02-2007

Dear Leroy
I will be thinking good thoughts for you as you get your next scans.
And even if you are "not a cancer patient" don't desert us, I have your blog as a life line to those who think and feel a lot like me. I have my next scans in Sept., however my bolld count is dropping so I have to have some more tests to find out why. I am a two year breast "cancer patient" and I don;t know when I will stop feeling like that. Ny occ. said cancer is a chronic disease. I guess that means we are always cancer patients

Sent by ellie wingerson | 2:17 PM ET | 06-02-2007

I don't have cancer, but I know at least two women friends who have had cancer and are now in remission. I also know others who have died from cancer. I've reflected on the label for persons who have or have had cancer. How about "persons living with cancer". Survivor seems to work for some, but as you've stated, there's always that possibility that cancer will come back. For me, it seems that "living with" implies acceptance, but not surrender; could also imply good and bad days; implies a movement forward and not being stuck with having cancer, but managing it - with medications or procedures that are currently available. What do you think? I'll keep you in my thoughts while you undergo your scans and send you positive thoughts and energy!

Sent by Rowie Quimson | 2:47 PM ET | 06-02-2007

I think first and foremost we must think of all our qualities that make us a human being. Cancer does suck but I do not want it to own me. Today i think we should try not to dwell on it so much.

Sent by jo | 3:53 PM ET | 06-02-2007

Leroy,
Just wanted to say I'll be thinking of you with the scans next week. I do pulmonary function tests every four months and CT scans twice a year as part of my drug trial protocol for the pulmonary fibrosis of HPS. I HATE waiting for test results.

Sent by Heather Kirkwood | 5:08 PM ET | 06-02-2007

Leroy,
We will be holding our breath in hopes of great news for you next week. Remember, what happens to 1 of us, happens to all of us in "the club". We love you and need you...more than you know. Good luck my brother.

Sent by Liz Zimmerman | 6:56 PM ET | 06-02-2007

Leroy -- With your cancer, you have wrestled with the issues of life and death that many do not face. My thoughts and prayers are with you -- that your tests are clean and that you are cancer free.

It's been 25 years since I had my life and death experience and it continues to inform the present. I would suggest that the cancer has informed you in ways few of us experience. Use that, continue to blog...and know that you will have the love and respect for sharing your thoughts and observations from a perspective of one who has faced the question. It won't leave you.

Many blessings and joy to you.

Namaste,
Elaine

Sent by Lainey Barnes | 7:42 PM ET | 06-02-2007

First, of course, best of luck with your scans next week. We are all rooting for you and hope that you get an "all clear."

I'm a leukemia patient (AML subtype M3), and I've been in remission for almost one year. I still struggle with whether I consider myself a cancer patient or survivor. For the most part, I have a fairly normal life. I run errands, take care of the kids, make dinner and avoid housework to the best of my ability. I even have my hair, though a little grayer than before.

I also take oral chemo every day, twice on Sundays, and three times every three months for 15 days. I cannot make it through the day without a 2 hour nap. Every time I sneeze I am sent to another specialist who handles me with kid gloves. I usually hand the doctor my most recent blood count, which I carry in my purse (!), so that the doctor can feel a little more at ease that I am not likely to bleed out or contract an unbeatable infection. When a member of the family gets sick, the first question asked is whether I need to find another place to stay while the family member recovers. It's almost like I've found some special sort of purgatory for cancer patients. It's not a bad place to be (it certainly beats the alternative), but it's definitely not normal. In some form, cancer still rules every aspect of my day.

I wish I knew what to tell you about next week. Every three months I have a bone marrow biopsy to determine whether I am still in remission. If not for Lexapro, I would never survive the week before the biopsy. I start checking my body for bruises and wonder if every anomaly is due to the cancer's return. I start thinking of all the people I have known that have relapsed, many of whom have not survived, and I wonder if I am destined to join that crowd. From what I understand, the fear of the big "R" never completely goes away. I guess Lexapro and I will have a long and happy friendship.

I have no advice except to say hang in there. I think every cancer patient and survivor has the same stress before each biopsy and scan. Just know that we have all been there and are all on your side.

Sent by Diane | 9:26 PM ET | 06-02-2007

All,

I don't suppose it matters whether we are "free" or not of cancer. Like alcoholics, will we ever be cured of the disease? Even though a doctor may place a descriptor such as "free" or "remission" on us, I imagine that each subsequent MRI, each blood test or PET scan will likely produce the same anxiety that came with the first, perhaps not as strong, but it will be present. It seems to me that most of us have been so deeply impacted by our experiences that we will never be "free" of it and that's ok. We have a "reminder" that life is terminal and to live and love well while we are able.

As a side, at some point after my first brain tumor re-section where it was known that 100% of the mass was NOT removed, the radiologist described my MRI portrait as "unremarkable"...I think that will do just fine.

Sent by john | 12:22 AM ET | 06-03-2007

Briana,
Call the Cancer Clinics of America. I am familiar with the one in Zion, Illinois. I think there is three clinics you can call. You can look them up on the internet and the phone numbers are listed. I have seen the miracles they can do!!! They can help you and will listen to you.

Sent by Deb | 5:53 AM ET | 06-03-2007

If there is no cancer found, you are not a cancer patient. How many millions of people are walking around, not calling themselves a "cancer patient" merely because it hasn't been found or diagnosed yet, ie; people who ignore symptoms, people who never go to a DR, etc. I'm not trying to oversimlify, I guess it could be called positive thinking. Works for me. God Bless.

Sent by Sammie | 5:55 AM ET | 06-03-2007

Scans, blood tests, biopsies, all necessary and all very scary. I know when my sister has labs in preparation for the next set of biopsies, I look at the results trying not to be obvious, and fortunate, I can read upside down. Any "H's" for higher than normal???? Especially in the liver function category??? The next week the biopsies. You know how long it usually takes, then the call or the surgeon... So far it is a sigh of relief, the call to dad. It was only after the first course of follow-up biopsies, my sister cried, as if with relief.

Scans... bone, CT. All necessary and all just as scary.

Stephanie, I am angry at your dr. for your.

To all Leroy, Stephanie, patients with cancer, NED, family, friends, and caregivers, my prayers for you.

Be as positive as possible, it can't hurt.

Sent by Susan Chap | 8:35 AM ET | 06-03-2007

Hi Leroy,

I ask my self the me thing; do I still have cervical cancer even though my cervix is removed? These days I look at it this way; if the the oncogyn really thought I was absolutely, 100%, beyond a show of doubt cancer free, then I wouldn't need to see him every 4 months. So I know somewhere an odd little renegade cell is resting, biding it's time. Hopefully, it's time will never come.

It is so funny you should make this the topic. I was talking to a fellow student the other day who lost her mother a year that day. She was upset and didn't fair well on her lecture exam because of the distaction. As we talked it out, I was sent back 3 years ago when my mom died of cancer 11 days before my cancer surgery. I remember thinking at the time now that both of my parents are dead, am I still adopted, or am I am orphan again.

Sent by Teri Thomas | 1:21 PM ET | 06-03-2007

Leroy, I guess the answer is, we will all be cancer survivors, or cancer patients, until we are not. Hopefully, many of us will have enough luck, or pull with the Man upstairs, to hear our cancer is in remission. I know, my chances are not good, but I still hope to hear those words. We all know the reality, even if the doc says there is no sign of the disease, we know that it may still be lying somewhere waiting.

I hope everything turns out well next week, that you get the best news possible. We all still live with the unknown, something we can't control. Just the way it is, "cancer sucks". Stan

Sent by Stan Wozniak | 3:08 PM ET | 06-03-2007

The last cigarette I smoked was exactly 12 years ago as of 10pm last night. Am I a non smoker? No, I am a smoker who hasn't smoked for 12 years. When I was first diagnosed with breast cancer 2 years ago, one of the first things I thought of was smoking! Something to help with the nerves. My first chemo? same thing. It will be a life long struggle, as with my cancer. We all have things we struggle with. These just happen to be mine.

Sent by Patricia | 3:41 PM ET | 06-03-2007

Leroy, My prayers are with you that scans are clear. I wanted to share this with you: "When you come to the edge of all the light that you know and you about to step off into the darkness of the unknown, Faith is knowing that one of two things will happen - - There will be something solid to stand on OR we will be taught to fly."
It's been a little over a year since that phone call, the morning my life flipped over. Cancer, cancer cancer. Stage 3a Lung cancer. I haven't regained "myself" again, I'm now discovering the new woman that cancer has forced upon me. Sometimes like a deer caught in headlights, some times a little girl curled up crying and scared, but I can be sure of one thing, it sure is a ride that I'm choosing to hold on to - with Grace. Please, always with grace.
Thank you for you, thank you for sharing, and one last thing, I love your writing.

Sent by Vikki Kramer | 4:12 PM ET | 06-03-2007

Good luck, Leroy. It's a bear waiting for results, as you know too well. I keep wishing there were some species of continuous monitoring, some kind of implant, so the patient would know at the exact moment when some marker or other went over the edge. It't the little stuff that can make you die a thousand deaths sometimes, like waiting, and driving there, etc. Good, good luck.

Sent by Teri | 4:58 PM ET | 06-03-2007

Dear Leroy, my thoughts are with you. I pray for good results. We need to have you around. You are our strength.

Sent by sasha | 7:31 PM ET | 06-03-2007

Dear Stephanie, I first saw you on the Living with Cancer documentary and have continued to follow your posts. I am a "Living with Cancer" spouse and read this blog on a daily basis. I am so very sorry to hear about your sad news. On Monday June 4th, I will be sitting by my husband in the chemotherapy center and I will be thinking of you and praying for you.

Sent by sasha | 8:30 PM ET | 06-03-2007

I am a cancer survivor...every day.
That's my moniker to those who ask...and a few that don't but I tell them anyway!
By the way, we cancer survivor's all live from diagnostic test to...
I am a two times survivor, colorectal 6 years ago with a reoccurrence to my right lung 2 years ago. Many complications later none the least being an ileostomy, I am a 59-year old with years to go...one diagnostic test at a time!

Sent by Karen | 8:50 PM ET | 06-03-2007

Leroy,I certainly understand your dilemma. I have a similar one. In October, 1998, I was diagnosed with two primary cancers, kidney and colon, was treated with surgery only. In 2004, I had a recurrence of the colon cancer, having two surgeries and six months of chemo in 2005. I am currently NED, in remission. I'm confused as to whether I should say I've survived cancer three times, or twice? If I count them on my fingers, I had kidney cancer, colon cancer and then colon cancer again. Three. But if I go by "times", I've only had cancer twice! What's your advice? I believe that once we've been diagnosed with cancer, we'll always be a cancer patient, no matter what, because I feel we all will forever be monitored, scanned, and living with the fear of recurrence. I will pray for you that you will have good results next week. I, like you and I'm sure many others, was sent for a little whirl when Tony Snow's cancer recurred, with a PET scan showing negativity, yet surgery revealed cancerous tumors. One of my oncologists told me that it takes millions and millions of cancer cells to show up in a PET scan, so in Tony's case, this was actually good news - the cancer was small enough they can hopefully treat him successfully once again. If our scans show up negative, we can at least be assured that IF something is there, it's still small. I've enjoyed your blog and the TV documentary. Very informational.

Sent by Brenda Needham | 9:10 PM ET | 06-03-2007

Stephanie Dornbrook, I am very sorry to hear about your setback. I hope treatment is effective.

Leroy, Call yourself whatever you like. Patient, survivor, etc. It doesn't matter and there probably are no good terms anyway.

As for continuing to write the blog, as long as you think you have something to contribute, please continue writing. Many of us have the same feelings as you and have the same ups and downs that you had.

Best wishes for a good outcome on your scans.

Sent by Jim | 9:53 PM ET | 06-03-2007

Leroy,

I saw your story on Discovery Channel on May 6th. I was very touched by your story. You are an amazing person and brave. I don't know if I had the strength to go through this like you do.

I watched the show because my mother got diagnosed with Colon Cancer this February (she just turned 60) - advanced stage with tumors in her liver and lung. It broke my heart when I heard the news. We are close - not in miles but in our hearts. She is in Europe and I feel guilty for not being with her every day. Unfortunately I can't drop everything here (and my 2 small children 7 months and 3 years) and be with her for months - which I know would be the right thing to do.

Your story gives me hope - and I told my Mom about you. Thank you for going public with this very private matter.

Good luck with the scans. I really do hope that you will be all clear again!

Thank you,
Cory

Sent by Cory Holz | 10:32 PM ET | 06-03-2007

You stop being a cancer patient/survivor when you stop being an award winning journalist, when you stop being a husband, a son, an uncle, an astute observer of life and its implications, when you stop being a blogger......you stop being......when you stop being.

Sent by jmh | 11:05 PM ET | 06-03-2007

Leroy,

I understand you questioning yourself and if you still have cancer and I must admit that at one point I was the same. But altho you have taken care of the cancer that you know existed, there will always be one cell somewhere lurking but you can't stress on it as then it will become one thousand cells and not be good for you at all.

I went in last week for a new scan and went in with the attitude that God will only give me what I can handle and that all is going to be ok.

I got the results of that scan just this past Friday and was told that my cancer was actually shrinking!! Unfortunately at this point in time there is no surgery that can be done, but the hope was that with the treatment that I am under it would shrink and the scan shows that it has indeed done that.

I don't look at having the cancer as an ending to my life, but as a beginning of the life yet to come and all that I positively have to share with others. Most people that I work with don't know that I have cancer and once they find out they have a different, more positive attitude and look at things in their life a little differently.

For so many when we say "cancer" they think the worse and that is totally understandable, however in the time since I was diagnosed I don't look at cancer as the worst, I look at it as the best. Weird? Maybe, but taking care of a husband with cancer for five years I learnt to not take for granted what we have in life but to enjoy it to the best of our ability. So when I was diagnosed with my cancer, I started to enjoy even more. I don't mean go out and run up the credit cards, I don't have any credit cards, to me they are nothing more than trouble, and I want to enjoy life and not worry that I am leaving my family with unnecessary bills to take care of. I want my family to remember me for who I really am and that is a loving, caring, giving, thoughtful, fun, happy person and not someone that worried about simple useless worries.

Sure I think about what the cancer is doing to me and to my body but I know that my frame of mind has alot to do with the rest of my decisions and as long as I keep a positive outlook on things then I really have nothing to worry about but enjoying life to the fullest ability that I have in which to do that with.

Sent by Judy Redd | 1:22 AM ET | 06-04-2007

Leroy,

I understand your feelings very well. I go back and forth. I had or have cancer. I guess it depends on my mood. I feel that I am definitely a survivor as I recently celebrated 3 years since diagnosis. Even thought I've since had 2 re occurrences. I survived 3 surgeries each followed with chemo treatments. So yes, I am a survivor. I too await the discussion with my doctor as my CA125 went up. I also have to have the exam with my GYN to complete my 3 month check up. It is terrible waiting for all this, but I keep myself buzy and do the things I have to do.

Eric Bell, you did not offend me. I am with you on this.

Sent by Betty in Germany | 3:13 AM ET | 06-04-2007

Stephanie: My thoughts are with you.. I hope that it turns out to be benign and a simple ovarian cyst... rather than something malignant...

Sending good thoughts your way...and hugs.

Sent by Krupali Tejura MD | 8:22 AM ET | 06-04-2007

Leroy - After reading your thoughts about us being cancer patients even after treatment?? I was diagnosed with breast cancer in 2004 and to this day I still refuse to call myself a "survivor" - I've never accepted this term, only "recovering cancer victim". I like the sound of that better - not that I have a negative outlook that my cancer may return but because I believe that deep down in each of us "it ain't over till it's over" will always be with us. Survivor is a word for all that we have endured...the testing, procedures, treatment, surgery, emotional and physical challenges, etc. I believe we will all be cancer patitents, either recovering, discovering or facing another challenge. We are all in this together - sending you courage and hope on your tests this week Leroy!

Sent by Teri G. | 9:44 AM ET | 06-04-2007

Hi Leroy,

When most of us "had" chicken pox as children, we thought of ourselves as "cured," and used the term "got better." It wasn't common knowledge to worry about that virus still residing in the body waiting for an opportunity to re-emerge as shingles. I guess the difference is that each of these is a one-time episode, where the symptoms can be managed for an effective recovery. There aren't too many deaths from either of these any more. Oh, to have the researchers in basements place cancer in this category of disease some day soon. In the meantime, I feel that it's my obligation to take the Lance Armstrong approach, at the same time I'm "getting better" from cancer.

To Katherine from San Juan Island: please ask your oncolgist about participating in a clinical trial. There are many of them out there for us "advanced" stage ovarian cancer patients.

To Stephanie Dornbrook, and Gretchen Hoag: I'm sending good thoughts and prayers your way, especially on Tuesday while I'll be receiving my clinical trial infusion - nineteen down, four more to go.

Sent by Sheara | 12:54 PM ET | 06-04-2007

Leroy,
1st my prayers are with you with your up coming test. I can relate with the what do you call yourself. I used to say cancer survior. As of Oct. 2006 i say terminal cancer patient. But since that diagnoses i have found out who i really am !! Thats Me !! Ken Jezowski Who happens to have a cancer that they say is terminal.
God Bless you and to all..
my Website and Blog on my cancer is.
http://helpinghand4cancer.4t.com

Ken Jezowski

Sent by Ken Jezowski | 2:24 PM ET | 06-04-2007

Dear Leroy,
I don't know if you subscribe to the email A Word A Day (AWAD), but today's quote seems a response of sorts to your question.
"The only man I know who behaves sensibly is my tailor; he takes my measurements anew each time he sees me. The rest go on with their old measurements and expect me to fit them." -George Bernard Shaw, writer, Nobel laureate (1856-1950)
Aren't we all changing constantly? It seems to me that for most of us, we are cancer patients as long as our cancers are in the forefront of our thoughts. I know there are people who work hard not to let the cancer control their lives. I find their efforts reassuring and inspiring. I have good days and not so good days. The best days are when I can stay engaged enough to forget cancer world for a while. If I ever get to string together enough of those days, I will no longer consider myself a cancer patient.
"The days come and go like muffled and veiled figures sent from a distant friendly party, but they say nothing, and if we do not use the gifts they bring, they carry them as silently away. -Ralph Waldo Emerson, writer and philosopher (1803-1882)
Your words are a gift that I cherish. I hope it goes well for you.

Sent by Martha Anderson | 2:47 PM ET | 06-04-2007

Cancer is a lived experience not just a diagnosis. It is fluid. My body remembers it. My mind connects to it at different intervals of my life. My emotions tend to it when I read about the 19 year old girl(me, in my medical records) who tried to be so brave and so good. I am a 22 year survivor of Ewing Sarcoma. Some days I still feel like a cancer patient. Like many survivors I live with the late effects of my cancer experience. My life is awesome, but not because I "Livestrong" I don't. Not because of the "miracle of living" or because I am an "inspiration", I'm not. I live simply and fully. Honoring both illness and health and the beauty of living as I am in my entirety.

Sent by Kathy Coleman | 3:17 PM ET | 06-04-2007

hi. this is new to me. never did message boards or blogs before.my husband, now 45, was diagnosed the end of november with sarcomatoid variant of renal ca with mets to the lung. they said he could not be cured or have surgery. was told had a couple months left. he was on sutent for 2 months and radiation to help with a cough. lung tumors responded, but abdominal tumor grew. developed aflutter, a cardiac problem as a result. switched doctors and started an aggressive chemo in the city. from the last week in feb to the first week of may,he was hospitalized seven times, each stay about a week. i couldn't work and obviously he couldn't either. chemo switched in may, and by june, he was eating, gaining alittle weight, and went to work 12 hours a week. recent ct scans show shrinkage of lung tumors, abdominal stayed the same, but developed 2 more growhts. will be starting a clinical trial this month. he doesn't eat at all. somedays, he can get 2 cans of ensure. just taking his pills takess him hours. he is full and bloated and uncomfortable. he hasn't been able to work at all this month, and seems weaker daily. some days, he has no voice. some days, he gets in a deep dark place too which is understandable.he stills wants to do clinical trial, i don't see how he will tolerate it and i wish he could experience some more joy lately. i read leroy's writing entitled, i want him back. i wrote something similar about my husband, brian. i hope to share it someday. i feel really lonely. need support. i know i should see a therapist, just don't know when i can do it. i make myself vulnerable sometimes to people, but i don't think they can handle it. i guess we are all doing the best we can. thanks,kathy

Sent by kathy taylor | 10:03 PM ET | 08-11-2008