Uncertainty Is No Replacement for Suspense

I wrote a couple of days ago about how important I think it is to still have a little mystery in my life. Who doesn't like a little suspense? That's why we love horror movies. Will there be something awful behind the door that the stranded teenager is about to open in the abandoned cabin? Okay, bad example, because there's always something awful behind the door. You know what I mean. But suspense is different from uncertainty. I'm not such a big fan of that.

We all know the old cliche about death and taxes. When you think about it, there really isn't a lot that is certain in life. When it comes to cancer, I think we could all use a little more certainty. Maybe just once, or even twice, I'd like something about cancer to be black and white, yes or no. In the old Roman gladiator movies, the emperor either put his thumb up or down. He never sort of left it in the middle.

Will chemo work? Don't know. We do know that it will make you pretty sick. That is one bit of certainty that I'm sure we'd all give up. What about radiation? Not clear, it may work or it may not. Is the tumor dead? We'll have to wait and see over the next couple of months. Will it come back? That's the scary one. And we'll only know the answer to that if it does come back. Up to that point, all you can say is, "Not yet."

I've gotten over my initial shock of first realizing that what we do next, what course the treatment takes, is actually up to me. I always thought that the doctors knew exactly what to do. I guess I had been watching too much TV. Periodically, we all have to make decisions, sometimes life and death decisions. And we can never be certain of the outcome. Our bodies respond differently, our cancers respond differently, the averages may or may not apply. In the end, sometimes you just have to go with your gut. I don't second-guess my decisions. I don't think there's much point in that.

I realize this is a rant. There isn't going to be any more certainty or clarity. No one can tell me if I do A, then B will happen for sure. That's just the way this disease is, and the way life is, and we have to roll with it. I guess I just wish sometimes that the response wouldn't be, "Answer hazy, ask again later." I always hated getting that one.

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What I don't like so much is all the options out there, in some ways its a blessing, of course, but on the other hand it can be overwhelming. Did i pick the right treatment? should i have gone the alternative way, macrobiotic eating and Noni, and all thats out there? I'm on a clinical trial and may not feel the reprecussions for years due to it but i went with my gut, as you mentioned leroy and i need to just go with my decision without doubt. I'm trying anyway.

Sent by Jenn | 6:48 AM | 6-15-2007

Dear Leroy, I understand what you are saying as my CAT scan came back with growth in lymphynodes in my chest and lungs. Did my breast cancer metastisize there or do I have an infection that is causing me to cough? So it's off for more tests and consults and waiting with the word that if the cancer spread I have only one option of chemo AGAIN! What kind of choice is that? When my life was sort of becoming normal again the roller coaster ride starts up. Everything you say is right on - I will just have to let my inner guide help make choices and hope for the best. Thank you for your words - truly "uncertainty is NO replacement for suspense" (I enjoy reading suspense but not living it!)

Sent by Vicki (FL) | 7:04 AM | 6-15-2007

Leroy

You do a much better job at "ranks" than I do! My "rants" aren't suitable for publication! LOL However you do make som every good points!

When you get right down to it... it just ins't much certainty in life! And of course you are correct there is even less certainty in cancer.

You are a very intelligent and thoughtful guy... I have complete confidence you will make the right decision for YOU.. and nothing else matters. I know you will consider you options appropriately and come up with what works for you.

I do find it interesting you comment about doctors knowing all... I am a 32 year survivor and was 20 when diagnosed.. at that time you just did not question what the doctor said... and of course there wasn't the access to information and resources there are today to assist in educating us before we made those decisions.. and to some degree "ignorance was bliss".. but honesstly I truly wish I knew then what I know now..... at least a few things would have been different..... and at that time.. you want to talk about uncertainty.............

So which is better.. to blindly follow a doctor's word.... or educate yourself and make your own INFORMED decisions?

You don't need to get a medical degree to make the right decision for YOU!

You are in my thoughts and prayers as you evaluate your options and make yur decisions.......

http://www.canceradvocatescoalition.org/CSC

Sent by Ronald K. Bye | 7:29 AM | 6-15-2007

You have summed up the cancer enigma..."If you and I have the same type of cancer and we choose the same course of treatment and it works (eliminates any sign of cancer) for you, why didn't it work for me?" The answer is probably at the molecular level to say that even though we have the same type of cancer, there are variations or sub-types within the cancer. This probably accounts for the differences in reponsiveness to same treatment.

Adding to the patient's confusion is that (in melanoma's case)there is not a consensus by the major cancer centers as to which treatment is best. Interferon is the FDA approved "Gold standard" for treatment for melanoma but the statistics for success are abysmal and the toxicity is great. Therefore, if you obtain a second or third opinion, there will probably not be a consensus so the patient is left to sort through the recommendations and choices and try to make the best decision.

Clinical trials are just that...trials. I'm glad we have them but they remain trials...an attempt to give a significant number of patients a drug or a combo of drugs to see if a statistically significnat number of the patients produce a positive clinical response. They also measure the toxicity of the drugs and side effects to see how well or poorly patients can tolerate them. There are different clinical trials offered by the major cancer centers (some offer the same ones) so how do you choose if you get second and thrid opinions and they are all different recommendations for treaments and/or clinical trials?

While I understand all of this intellectually and academically, as a patient, it is very difficult to sort through and come to a decision as to what is best for me and what is likely to produce a positive response for me!! Time is not on our side!!

Leroy, my recommendation for you is to have a Plan A, Plan B, Plan C, etc. so that if the there is no responsiveness to Plan A, you have another alternative to go to. In many cases, we all must endure numerous types of treatments in order to find one that will work for us. Just the nature of the "beast", cancer.

Be your own advocate! If the words and music don't seem to align, get another opinion. We, as patients, are often too intimidated to ask all of our questions and get the answers explained in our terms.

As you can tell, I have some strong feelings about all of this.

Thx Dr. Tejura for correcting my post yesterday about linear accelerator vs. proton beam therapy. I was trying for proton beam but couldn't think of the words.

Leroy, remember, and I know you do, that the treatment you select may or may not produce the desired results BUT always go into it with HOPE in your heart.

Best wishes and prayers as always.

Sent by Al Cato | 7:34 AM | 6-15-2007

In a situation such as yours Leroy, I guess that all one can do is to ask all of the questions, have all of the tests, get quiet, listen to your gut, and make your decision. I'm so glad to know that you don't second guess yourself. What a waste of energy "shoulda, woulda, coulda" is. I'm wishing you clarity, and a good outcome.

Sent by Nancy K. Clark | 7:35 AM | 6-15-2007

Leroy,
You have alot ahead of you. Take it one day at a time. Have you considered doing another program perhaps with Ted? I think that this in itself is theraputic. There are so many around us with cancer. We all are waiting for the "cure" and how to get it. Our hopes go up and down. Emotions are so raw. My brother Jeff who has brain cancer, 5 yrs this July. He is doing the herbal approach now. Don't think DUke has anything else for him. He has been through so many trials, radiation, His tumors have doubled in size from his last MRI. He is 36 yrs young.Surgery is not an option. He does not really want to travel. It is such a helpless feeling for us as a family to see him this way. We will never be the same.One Dr. at Duke put it this way, You see Jeff, He looks so good, You see his MRi,and it is hard to believe it is the same person. Best of luck to you. Don't give up. Elizabeth Bradford

Sent by elizabeth bradford | 7:55 AM | 6-15-2007

Leroy: Boy, have you hit the nail on the head with this blog!

Uncertainty. That's the word for what we are living with alright. No one, healthy or otherwise, has any real certainty in life, I guess. But don't you just HATE living with your nose being rubbed in uncertainty all the blasted time????!!!!!!

Sent by Sandra Shuler | 8:04 AM | 6-15-2007

I was saddened by your recent news, to the point that I couldn't read or post for several days. I deserted the blog, which has for so long now been an anchor of sorts form me. I took the news personally, I now realize, which wasn't an altogether bad thing, because it forced me to reevaluate my own situation, a thing I must constantly do. No, we do not know what will happen. Not exactly, anyway. We have ideas about it, none of them good. In the days since I was last brave enough to visit, I've decided that having cancer is much like I imagine it is to be in a really bad marriage. And for better or for worse, I understand now that I am married to cancer. And, like the witless, damaged partner it is, cancer hurts me. Cancer sabotages my plans, and makes new plans for me without consulting. Cancer takes up too much of my time. It forces me to focus my energies in ways I don't want to. It threatens to take away the things that are dearest to me. It wants to alienate me from my friends. Cancer makes me cry. My saving grace is, that I am by far the better half of this marriage. I learn everything I can about cancer, so that when and if there's a way out of this, I'm ready to spring into action. I surround myself with other cancer spouses, where we conspire against it. I accept cancer's power to destroy me, but don't show it my fear. I will never again let cancer sneak up on me and devastate me. I am always ready for the sucker-punch cancer aims to deliver. I know it will come, and I know it will hurt. But I also know I can take a lot of blows before I give out or give up. Cancer won't leave me, and cancer won't let me leave, but it doesn't get to decide everything.
My thoughts are very much with you these days, as I hear you, through your words, moving painfully through this exhausting maze of uncertainty. It's a bad place to be, and like everyone, I'm sure, I appreciate your willingness to let people into it. It helps me, somehow, to be braver about that which I do not and cannot know.

Sent by Ellen | 8:09 AM | 6-15-2007

The important thing is to keep asking. Doctors don't have all the answers but it is amazing if you keep tweaking the question the answers we can get.

I'm sorry things are so murky, I know it is hard. One thing I've learned over the last two years is to "trust your gut." It may not always be right but we know our bodies better than anyone. We also have much more invested in this fight than our doctors. I've looked at my doctors and said, "Yes, but I have the most to lose." Fight the good fight.

Sent by Dona | 8:13 AM | 6-15-2007

Hi Leroy,
Don't worry about "ranting". It's OK. (I'm sure I'm not overstepping my bounds when I say... I'm speaking for all your readers...That's what "we're" here for... Your "Blog Family").

We all do the same thing, and everyone needs to "get by with a little help from a friend", right?

I myself, know what uncertainty feels like and I also LOVE a good horror movie...the one's that make you jump in your seat when you least expect that shocking thing to happen. (Although for the most part... the movies lately are so predictable.) I wish cancer were the same way. There are times, I "convince myself" not to worry... and not to sweat the small stuff and for the most part, that's how I have been living. But, every now and then, the terror of not knowing creeps into my subconscious and really puts me on the edge. Currently, that's how things are now... I know (hope) it will fade soon... (could you tell I'm an Optimist?).

My friends and family tell me... "Shirl... you're the one always telling me not to sweat the small stuff... don't worry be happy... so now you do the same thing!" But its different when the shoes on the other foot. OK... OK... so now I'm the one "ranting". Thanks for being there to listen. Shirl (P.S... keep ranting). http://imskwerally.tripod.com/

Sent by Shirl | 8:30 AM | 6-15-2007

leroy , i truly believe you are in the MOST difficult place right this very moment. as much as we (your blog family) want for you to never give up the fight and for you to continue to leave your legacy , the choice must be yours. i will respect whatever choice you choose to make. you will be in my prayers today and always ,with cyber hugs surrounding you.

Sent by marianne dalton | 8:47 AM | 6-15-2007

Vicki in FL - I've got breast cancer mets to a lymphnode in chest and lung area. They treated me for pneumonia for a month, based on an xray - and then when I wasn't doing any better, they did the CT scan which showed the enlarged node. I pushed them for answers as far as how much good chemo would or wouldn't do - and they admitted that with my type of Br cancer that the chemo wouldn't really add that much time, so for myself, I've chosen not to do it for the sake of 6 extra months. To lay on couch with a bald head and puking? No thanks. It's true what someone else said - we have to go with our own gut feelings on what is right for our own situation and don't do the 2nd guessing - although I admit that is tough not to do sometimes.

But you will be in my thoughts and prayers as you go through your scans and waiting for results! I pray it's an infection and they can clear it up with some antibiotics!

Sent by Vicky (NY) | 9:16 AM | 6-15-2007

My sister-in-law was diagnosed with breast cancer 6 weeks after I was. We're the same age. We both were stage 2. I had a modified radical mastectomy after a lumpectomy failed to get clean margins. She chose a double mastectomy. We went through chemotherapy at the same time as well. The drugs I received were different from the drugs she received. Both of us were at big cancer/medical centers: Boston and Houston. At the time it was disconcerting that she chose a different surgical solution from mine and that our oncologists chose different drugs for the chemotherapy. I desperately wanted to have the "right" treatment. Alas, there are many options out there with no one right answer. The uncertainty was one of the hardest parts for me. And, there was precious little comfort to be had with all the uncertainty.

I keep you and others in my thoughts and prayers.

Sent by Judith | 9:32 AM | 6-15-2007

Good morning Leroy. I don't know what to say to you so I'll just virtually sit next to you and let you rant. Sigh.

Sent by Alycia Keating | 9:42 AM | 6-15-2007

Dear Leroy/ all. This is something I read this morning on a site called "Earth Based Spirituality" It goes........... We try to find complicated answers and involved procedures to solve our problems when ALL our answers lie within ourselves. The greater our exteriority of our focus the more complicated and cluttered our lives become. When we become aware and take corrective actions we receive confirming emotional and physical clues that we are back on the right path of continuing our journey.

Although I am still trying to digest the full meaning of this, I wanted to share it wtil all. Prayers as always, Sasha

Sent by sasha | 10:01 AM | 6-15-2007

Dear Leroy,
I was diagnosed with breast cancer exactly two years ago. Friends had told me about your blog during treatment but it was too much for me then to read it. After surgery, 18 weeks of chemo and 6 weeks of radiation I am fine. Still going to follow ups and wondering daily if the cancer will come back, but trying not to be overly obsessive. Ha! I read your blogs now and watched the documentary with Ted Koppel and want you to know that you are in my prayers everyday. I have so many friends and relatives who have had cancer and who have it now. I have been to two funerals of friends this past year and I want to yell that it is enough already. Please know that there are so many pulling for you and thinking of you everyday. I guess we are all members of a very big club, not necessarily one I would have actively chosen, but there it is. I meet so many people whose lives have been touched by cancer in one way or another. You are brave, real and honest and you are an inspiration to me. God bless you.

Sent by Lianne Friedman | 10:26 AM | 6-15-2007

Leroy, my heart is with you. I wrote you one other time but I don't know if you received it. Therefore, I am writing again. St. Joseph Mercy Hospital in the Ann Arbor area has been privileged to have receive the first CyberKnife in Michigan. CyberKnife uses the latest robotic radiosurgery which combines image guidance technolog and computer-controlled robotics. With this type of pinpoint accuracy, their physicians are now able to treat areas of the body, such as the spine, lung, prostate, liver and pancreas. Their web site is - www.sjmercyhealth.org It was exciting news to me. I have stage 4 kidney cancer and since chemo and regular radiation is not helpful, I was pleased to learn that they are having success with kidney cancer also. New medicine became available in pill form for me and is working at this time but it is a comfort to know that this radiation is a possibility for me also. I had to try again to inform you of this technology in case you haven't heard about it. My prayers are with you Leroy. Don't give up.

Sent by Jackie | 10:26 AM | 6-15-2007

Leroy, there is great clarity in cancer, and it's found in your blog. Sometimes I get whiplash from nodding my head up and down in agreement with your feelings, fears, and experiences. I have been comforted to learn from you that metastatic melanoma is not the last remaining medical mystery. I hope that you are in turn comforted by all your "responders" and that your cancer responds to the next treatment you choose. Marilyn

Sent by Marilyn | 10:38 AM | 6-15-2007

Leroy,

Another way to look at it is that there is a precise and exact answer to all your questions - you just don't know what it is.

In times of trouble, a friend of mine used to say to me, "relax, it will be revealed." There is SOME comfort to this in that staying with not knowing doesn't feel good takes you away from being present for what is there for you today.

Meanwhile, do what feels best for you, including "ranting." We are ready to listen and support as we are able.

Sent by Diana Kitch | 10:38 AM | 6-15-2007

Leroy, I know exactly where you are at. After my second 4 hr. surgery to remove the cancer, I had 3 happy surgeons. The good news was they got it all, and that is unusual, with ovarian. I don't think I was as happy as he expected me to be, how could it be, I was still dealing with the bad news that it came back. And it came back without a marker, so I don't have a blood test to tell me, it might be coming back. So now I am on chemo again, pleasant adventure, with knowledge that with my disease the second recurrance comes sooner than the first. It is tough to stay positive with this pox upon our house.
So as you begin the fight again, my heart goes out to you and that place that you are in. It does get better. To Life!

Sent by Rita | 10:46 AM | 6-15-2007

Dear Leroy,
I agree with your rant and sometimes it is the only thing we can do when we live with cancer. I was told once to stop resisting and just live in the moment after I was told I had stage IV NHL. By nature I am not one to complacent and not resist. I ask questions of my doctors and nurses, because I do want to have a bit of control in my life. I get angry when my doctor says he needs help and wants to consult another doctor because as I once told my doctor, you deal with cancer all day, how do you not know? I rant and blog my cancer journey also, it gives me peace during this time of confusion and uncertainty. I read your blog and feel though we do not know each other, we are on this cancer journey together, each day fighting to live, fighting to be heard.
Hope you have a peaceful day,
Miriam

Sent by Miriam | 11:22 AM | 6-15-2007

Jackie - I read your post about the CyberKnife and found it interesting. They also do it in Pittsburgh as well as a couple other places I believe. I keep thinking about checking into it for myself.

It's good to have so much input from so many different people! Thanks to all of you for participating.

Sent by Vicky(NY) | 11:51 AM | 6-15-2007

Hello again Leroy,
I'm thinking of you constantly, knowing how you feel about "uncertainty", as I call it "living on the edge". I'm hopeful that you will come through again!! Sometimes when we think there is no hope a ray of sunshine will appear. I have been there, know the feeling and know that I will never be free from the cancer world. Just have to keep on "praying for more time". (Jackie - If you see this blog, I would love to know which kidney cancer medication you are taking and for how long. I have Stage IV Advanced Renal Cell - mets to both lungs and have been taking Nexavar for 3 years. I have scans every 4 months.)
Leroy, you have done so much for the cancer family by giving us a chance to communicate and educate ourselves.
Betty Lewis

Sent by Betty Lewis | 11:57 AM | 6-15-2007

In some ways, uncertainty is my friend. If the averages "may or may not apply" then I can have hope that I'll be among the very small number who survive for many years with my diagnosis. A few years ago, B.C. (before cancer), I took an insight meditation class. There were no great bursts of enlightenment, but that practice did help me achieve a very peaceful state, putting all worries out of my head for awhile, just concentrating on my breathing or on the way each blade of grass felt beneath my feet. I highly recommend it!

You are someone I respect a lot, Leroy. I'm confident you'll make the right decisions for you. You are on my mind and in my heart throughout every day, as are others on this blog -- especially Stephanie, who I believe is having surgery today. As Tiny Tim said, "God bless us, every one!"

Sent by Doris | 11:59 AM | 6-15-2007

Thoughtful take today, Leroy! and pretty tame as rants go. And YES about holding the bag to decide. But YES also to the fact this process now leaves room for your gut to weigh in -- that is big. I wish you peace, clarity, wisdom and comfort with the emotional calculus you are now working.

Lifting you up with thanksgiving,

Sent by Sarah | 12:17 PM | 6-15-2007

Dear Mr. Seivers, Leroy,

My name is Kim and as I read your blog post today, I started crying. The tears are for both of us, I suppose. Your gut-wrenching honesty, the cruelty of the disease, the agony of choosing, and the damned "answer hazy try again later" shards of reality, that the answers are frequently some combination that may or may not lurch awkwardly in the direction you would most like everything to go.

I've still got my "heartlight" turned on for you. Maybe I can turn on one for myself somewhere, because I'm facing a hysterectomy in a couple of weeks that will let me know whether the fast-growing tumor in my uterus is benign or malignant. It's not my first surgery for cancer, but it is the first surgery of this particular type, and I'm scared out of my mind. There is a supportive group of people around me, but I don't always know how to let them help me with this. It taps into a place of complete horror and shame for me. So what I frequently end up doing is shoving them as far away as possible in order not to contaminate them. (weird where one's mind can go, huh?)

Well, your blogs keep me going each day. They, you, have become a link to life for me. Because suicide is a daily struggle. However, each day, I wake up wanting to know how you are doing, and wanting to send you another beam of "heartlight", so I hang on another day.

You touch my life and spirit deeply. Thank you for being willing to give so much of yourself, and so honestly on this "my cancer" blog. I am following the markers you are leaving on this trail of your life. Your life is a life that is making a difference (in a lifesaving way) in the life of a stranger. Thank you.

with kindness and courage,
Kim

Sent by Kim B. | 12:22 PM | 6-15-2007

It is tough on the patient, not knowing what path do I take in my treatments. Over 33 years of remission I gained a lot of respect for what the Doctors have to deal with. When I walked out his door, he was happy that I was winning, but his next patient was not a winner. Every day when he comes home, how does he clear his mind, knowing tomorrow will be the same.
As I related in an earlier blog, 12 years into remission, my doctor came down with cancer and was in the hospital, his old nurses worked for his son, I was getting a check up, and they asked me to go visit and cheer him up.It was 10 times worse than all the chemo and radiation. I knew this was the last time I would talk with him. That visit made me realalize what the Doctor is going thru standing at the patients bed.
Think what your spouse is going thru, they are evolving right before your eyes. They cheer you on, while hiding the fear from you, they watch you while you sleep making sure every breath is not your last. CANCER becomes part of their life forever.
It is still up to you to fight the MONSTER.
You decide the final outcome.

Sent by Sam Means | 12:29 PM | 6-15-2007

Leroy, I've written before, but computer's been wanky, so don't know if it went through. I have advanced stage ovarian cancer. In "remission" 2+ years. Waiting for the Beast's return, and in the meantime,tamping down the fear, and making plans.The uncertainty can ruin your "good time"---that shoe gets heavier and heavier as you wait for it to drop. Your shoe has dropped, again, and I am sending hope your way, hope for successful treatment, and hope for another trip to Hawaii.
Carol

Sent by Carol Erlingheuser | 12:33 PM | 6-15-2007

First of all, thanks, Leroy, for sharing your thoughts. It's beneficial to hear someone else speak those words that play through my mind.
I had prostate cancer surgery eighteen months ago. The surgery revealed that the cancer was not localized. Regular checkups show the PSA level continues to rise.
The uncertainy does raise many questions in my mind. At what point might I seriously consider the remaining treatment options? Fortunately, I'm still capable of doing most of the things I love to do. Should I give up some of the good days for extra ones later, where I may not be able to do these things I love? My gut feeling says, no, do all you can do for as long as you can do it, then go from there.
Each of the choices we make in this process are very difficult ones. But it still comes down to seeking what we feel we must do to get the most out of life.

Sent by Dale | 12:37 PM | 6-15-2007

Since my husband was diagnosed with an Astrocytoma I have to think a lot about the uncertainty of life. Today we live with the illusion that we have things under controll. We have the flu, the cold, we take antibiotics. A 100 years ago the same cold could kill you. So we happily think that we can controll everything even cancer. Rounding up enough people to pray, finding the right doctor with just the right treatment. My husband was diagnosed with a big bang out of the blue (major seizure). The surgery went well, but two days later he almost died from rolling seizures. When most of the nurses and and doctors started giving up on him (you can see it in their eyes), he turned the corner, woke up and was fine. Aside of a weak right foot he hadn't lost a thing, which is very rare after brain surgery. Almost 8 month later he is running 5 miles a day, playing soccer, traveling, the chemo is working. Still I'm uneasy and hopeful at the same time. I learned that things are given and things are taken for reasons I will never understand. Everything is possible. As a 21th century person it's just so hard to live with it.

Sent by Sabine | 1:32 PM | 6-15-2007

"I've gotten over my initial shock of first realizing that what we do next, what course the treatment takes, is actually up to me. I always thought that the doctors knew exactly what to do": I agree totally. That was, and continues to be, such a difficult realization for me. "No one can make the decisions but me" and many days--this is a job I would rather not have. You are so important to us in expressing the same feelings that we experience. It makes us feel just a little be less "weird".

Sent by Joyce Cooley | 3:29 PM | 6-15-2007

Leroy, I tried to email you yesterday but my message was blocked and I can only think it is because there are so many of them! More and more each day. This one may not get through and if so, so be it. It is not very helpful anyway. I wonder, after reading your daily writings and then the comments, whether we are finding any peace and trust in the medical profession, or simply allowing each of them to use a different theory on our precious bodies and lives. They all seem to take off and run with every new treatment before it is even tested for long.
As I have told you, my cancer was removed surgically 24 yrs ago, I had six months of Chemo and when I began to bleed from every opening in my body, the kindly older doctor and head of that particular medical group in NC, who was taking the calls on that holiday for the others said that he "thought that I had had just about enouth Chemo", and he stopped the treatments. Within weeks, I began to feel like I wanted to live and get on with my life once again. What followed was constant nagging and begging by the younger doctors and Oncologists that I must come back on Chemo because I had not had enough and should continue for at least the full year. I would not. I told them that the Quality of my life was more important to my husband and I than the Quantity of life. Well here I am 24 yrs later, and 77 yrs old and do you know that I had a stroke 2 mos ago. A small one that only affected my eyes and I happen to be an artist. However, I am lucky to be alive and still able to enjoy life with my husband. Point being - when is it time to stop and take control of your life? Think about it. All the wonderful folks who care about you and are in the same position, sound so confused and unsure. Doctors are not Gods. Just humans like ourselves.

Sent by Jeanne Rakowski | 4:29 PM | 6-15-2007

"Answer hazy, ask again later". Yeah, not one of my favorites either. My oncologist has a version of the famed "Magic 8-Ball" in his waiting room that appears to have come from a drug manufacturer. I've read that of the 20 possible answers on the original 8-ball, 20 are "yes" or some version of it, 5 are "no" or some version of it, and 5 are vague. I'd swear that this version has 20 vague answers, which I guess would be the version issued by the drug company. I sure with they could have supplied a version with more "yes" answers.

Sent by Bob Maimone | 6:48 PM | 6-15-2007

Leroy,
I haven't stopped thinking about you since your scans. I'm doing my second race for the cure since May, tomorrow, and will send good wishes you way. It going to be a emotional one for me because my parents, sister, aunt and
friends will be supporting me. I'm still new at this. It's a weird world to be in.

Sent by Lisa | 6:52 PM | 6-15-2007

Leroy, You sure can swing a hammer! You hit the nail on the head with your comments. If only the Doc would say okay here is the plan, and it will work! We cancer patients are not that lucky. It is a riddle wrapped in an enigma, and it is our lives. Why do they go to medical school for so long, and not have the answer? Must frustrate them too! But here we are making choices we are clearly not qualified to make. You make the choice and you hope it provides death to the cancer. Our choice is clear live or not, fight or not. We must choose to fight for as long as there is even a speck of hope. Hang in there.. Stan

Sent by Stan Wozniak | 7:17 PM | 6-15-2007

Hey...you deserve to rant and we are all here to listen. You can cry on my shoulder anytime and I know I now have a wonderful group of caring people that I can lean on too. You won't have your commentary written before I go into surgery Monday but my husband will have my laptop in my room when I come out.

Sent by Kim Lukich | 7:47 PM | 6-15-2007

I have been working on telling more people about my "condition" . It looks like I may need time off from work for some treatments and it is possible I may not return to work. When I try to explain that I have been told that my cancer is being labled "chemo resistant" and the theory behind some of the trials I am trying to get into they just can't get it. I think people do not want to hear that we can't always control or predict the outcome. I had a co worker in my office yesterday who finally said "you are going to get this cancer to go away and things will be back to normal". I think that statment was more about her fear that she could be in a situation that cannot be controlled. I continue to hear that I am "so young", I "look so good", "you were suppose to be done with cancer", "I thought you were cured" etc.....

I thought I was having a problem accepting the uncertainity, but I am dealing with it better than I thought.

Sent by Jill | 7:52 PM | 6-15-2007

Leroy, I always like to read about your day. You are family now. So many of your thoughts are the same as ours. I can feel your discontent with your situation. The dread.
It seems so hard to put your emotions in any usable form when you just keep crashing down as soon as your get up higher.
Try to remember if you can that each breath is a gift. A day without pain is a gift. Another day with love is a gift. A day that you can make your own decision about your life is a gift.
It will get back on track... just a different one... again.
All our best,

Sent by Deb S | 8:19 PM | 6-15-2007

Dear Leroy:

I know the feeling of not knowing what to do. We do the best we can, following your inner voice is extremly important.

I just stopped Vectibix for my lung tumors(colorectal ca met to the lungs). I had every side effect that Vectibix offered, including a moustash, acne, exema,ingrown upper eye lashes and grew eyebrows that look like my Dads(God rest his soul). All of that and it didn't work. Now, my oncologist wants to start me on the big chemo again. What to do? I said I needed time to heal. So I've taken time to reflect and heal. Uncertaintly is the rest of my life. But if you think about it; really it isn't. I know how the story ends. I can prepare for it by Loving all my family and friends telling them how much I appreciate and love them. I am not going any where soon, I hope, but I have time to care and tell all whom I care about. I am not giving up by any means. I will probably go on to the next Chemo or whatever makes sense to me. I wish it could be different but, Ces't La Vie. It is, what it is. I believe the secret is to Live with this burden we have been given and try to be at peace. Not alway easy to do, but not impossible. With Gods help.

Leroy, Bless you. You are in my prays

Beth Morrison

Sent by Beth Morrison | 8:49 PM | 6-15-2007

Good evening all,

You know life is murky. Each day starts and we have certain expectations, however, the smallest speed bump can send us into a tailspin. I thought after all the years of being alone, and not having one in my life, here was my chance. Then my sister got sick. I know there is a saying, "God doesn't give you more than you can handle." I didn't know which end was up, how to get answers the financial questions, and there wasn't anyone to do it for me. I cried, screamed, broke a calculator, didn't sleep, eat, and somehow, I got through it.

Its choices, we don't always like the options out there for us, yet we may have to choose. Its taking a test and trying to pick the absolute best answer and you can only pick one answer.

At some point, it may become quality or quantity. Because we are humans, nothing is ever going to cut and dry, neat and pretty. We can play the cards we are dealt or fold 'em and go.

Have a nice night all.

Sent by Susan Chap | 9:43 PM | 6-15-2007

I think your magic 8 ball should say "Live". I think you are someone who values living and knows how to do it. When you find yourself just trying to avoid death, then its time to rethink things.

I know in my case my religious faith puts great emphasis on living, but I think it should be on living life to the fullest.

Sent by Crawford | 10:23 PM | 6-15-2007

Yes that would be wonderful. If I do A then such and such will happen. Etc.

I am going nutty right now trying to decide whether to stop doing Avastin with my regular chemo routine. It is an anti-angiogenesis drug. It has caused me to have very very high blood pressure, as high as 200/100 at times. But the presumed benefit is that it keeps me alive longer with Stage 4 breast cancer. By complimenting the chemo I do, it allows me to have a break from the more "rugged" chemos, which make me bald .... and I am tired of baldness !!

I have tried 4 different blood pressure meds and none of them have brought my pressure down very much. So my "regular regular" doc says "get off of Avastin."

My oncologist says Avastin is important for my particular cancer picture, feels its probably the reason for 2 liver mets of 4 going away. I want very much to keep taking it.

But I don't want to die of a heart attack or stroke.

I have to decide this week whether to stay with Avastin - and commit to finding a way to lower my blood pressure, OR get off Avastin, and get onto a more powerful chemo again and go bald AGAIN (I'm on Navelbine now which is lovely...no side effects that I really notice.)

I wish I had a magic telescope that could look down tunnel A and tunnel B. At the end of one is the door marked "Death." At the end of the other tunnel is the door marked "Life."

Damn. It's so frustrating.

I wish you a magic telescope or, at the least, good luck in making your decision. Yeah...... I grew up thinking doctors knew everything and certainly at least could tell you what to do when you couldn't decide.

Yeah, right.

Sent by Nancy O | 10:52 PM | 6-15-2007

God bless us every one, indeed. Some days I just read what Leroy has to say, and some days I read all the way down to the end of the scroll. Today I read everyone's entries. Thanks to each of you for your stories and words of wisdom - and rants! Thanks to Leroy for bringing us all together. I'm doing fine just now - waiting to heal from the last surgery and radiation, waiting until time for the next MRI. Y'all take care, now.

Sent by Genevieve | 11:29 PM | 6-15-2007

I have always been thr type who planned everything. Always new what was coming. GBM was very hard for me. People would ask me something for only a week away and I had to ay we will see. Over and over again. I believe ome people thought I was blowing them off. But anyway. This in my opinion has been a very big relief for me. I was always so stressed. Time lines and disapontments if things dd not go like I had planned. Now I know for sure that I have no idea what is next...Please excuse the following language. Nut a lyric from a song. F--- it or fight it. It's all the same.... pretty much to the point.

Sent by Christine VanHoose | 1:44 AM | 6-16-2007

Leroy -- not that it's much of a consolation, but I know my Dad always countered his options and the ongoing uncertainty with the phrase "Beats the alternative." And in the end, I guess it's the frustration of being forced to realize (with no option for distraction from it, and THAT'S the truly tough part) that there truly is only one certainty. The luxury for the rest of the world is that they can focus on something else anytime they want. You're always in my prayers that there continue to be alternatives. Plain and simple, though, the not knowing or what we always referred to as "the new new" just sucks. Hang in there!

Sent by Tammy Reasoner, Cincinnati, OH | 6:22 AM | 6-16-2007

Dear Leroy, I believe that this poem says it all. When I read it, it had "Leroy written all over it"
A Choice In Life
Don't ever give in, to the forces of the past
Never be afraid, to make a moment really last
Always strive for greatness, in all you say and do
Let everyone see, the very best inside of you
Show only kindness, to the people that you meet
And never let yourself, give up in self-defeat

Always take the time, to hear what others say
And always ask yourself, What more can I do today
Never say anything, you know you will regret
And never let the small things, get you so upset
Believe in the power, that you hold within your mind
And keep the goals you make, in sight and well defined

Always hold your head up, with dignity and pride
Let the values you hold within, be your truest guide
Never stop growing, learn everything you can
And before you start something new, be sure to have a plan

Start everyday, with a smile upon your face
And never take anything, you know you can't replace
Always give more, than your expecting to receive
And in your fellow man, try always to believe
Never be afraid to ask, for a helping hand
And always take a moment, to try to understand
Try to make a difference, in all the lives you share
And always show the ones you love, that you really care

Always Choose to Make a Difference, and
Make a Difference in All that You Choose

And Leroy, you DO make a difference.

Dear Leroy, I believe that this poem says it all. When I read it, it had "Leroy written all over it"
A Choice In Life
Don't ever give in, to the forces of the past
Never be afraid, to make a moment really last
Always strive for greatness, in all you say and do
Let everyone see, the very best inside of you
Show only kindness, to the people that you meet
And never let yourself, give up in self-defeat

Always take the time, to hear what others say
And always ask yourself, What more can I do today
Never say anything, you know you will regret
And never let the small things, get you so upset
Believe in the power, that you hold within your mind
And keep the goals you make, in sight and well defined

Always hold your head up, with dignity and pride
Let the values you hold within, be your truest guide
Never stop growing, learn everything you can
And before you start something new, be sure to have a plan

Start everyday, with a smile upon your face
And never take anything, you know you can't replace
Always give more, than your expecting to receive
And in your fellow man, try always to believe
Never be afraid to ask, for a helping hand
And always take a moment, to try to understand
Try to make a difference, in all the lives you share
And always show the ones you love, that you really care

Always Choose to Make a Difference, and
Make a Difference in All that You Choose

Sent by sasha | 8:26 AM | 6-16-2007

Hi Leroy,

Last evening I watched the Ted Koppel Living with Cancer special. I believe that finding you and your blog will make a great positive difference in my life.

On March 16, 2006 I was diagnosed with non-small cell lung cancer that had spread to my pulmonary artery. I am not a smoker so it came as a huge shock. Because I was considered young (59) and very strong, I went through three rounds of the strongest chemo available. Then I had a lobectomy and radiation. I almost died in surgery, but I had fantastic, aggressive doctors. After surgery I pushed my doctor for specifics and was told I had about a 30% chance of survival.

About 4 months after the surgery and radiation I started having pain in my right hip. It seemed very unlikely that it was cancer, but it did light up on scans. They thought it was a stress fracture or arthritis. Last week I finally had a needle bone biopsy, and sure enough, it is lung cancer that spread to my hip.

Yesterday I had new brain MRI and PET/CAT scans. Thank God it appears that the cancer is only in my hip. On Monday I start radiation again. My oncologist is caustiously optimistic. He still thinks there is a chance that we can cure this nasty thing.

I too live in a great area for cancer treatment (Seattle)and I have very good medical insurance. Also I have a wonderful support system of family and friends. I am so blessed.

Discovering your blog is such a gift. I have so many of the same feelings and thoughts. It was such a relief to hear my thoughts and feelings verbalized by other people. We are all so similar in so many ways.

It's funny. I didn't watch the Living with Cancer show until yesterday because I didn't want to consider myself as "living with cancer". Until Wednesday, when I got a definitive diagnosis that my cancer had spread, I told my self I was cancer-free and didn't need to watch the show. It should be noted that I did save it on my DVR, just in case my cancer came back. I am laughing at that now. It is pretty funny how we play games with ourselves.

I am a positive up-beat person. I have spent my life trying to help others and make the world a slightly better place. I don't want to leave this world now. It is so beautiful and so filled with loving, caring people.

Until yesterday I didn't even know you existed, yet today I feel so connected to you. Thank you. You really are doing something so important. I plan to stay with you via your blog as long as we both are here. Life is such a gift.

Laurel Jones

Sent by Laurel M. Jones | 11:40 AM | 6-16-2007

Leroy - I too am looking to make a plan. I'm not tolorating my chemo very well. I am in a trial for advanced Pancreatic cancer. Now we are all scratching our heads as to what to do. Even my doctor held off this week to give my body a break and to search for a new plan. I had a CT Thurs. and had them burn me a cd. I look at it and compare it to my last one. Are the spots on my lungs getting smaller are they gone? Wait that one was not there lasat time. I need to come up with my own plan A,B,C. I get blood work done on Monday and then the doc reviews my scan. Do I want to stay in the trial? Can we reduce the dose? Am I looking at the right things on the scan? I know alittle about what you are going through. We all do. This weekend is filling me with doubt and uncertain choices. I wish it would hurry up and be over so I can see the doctor. But wait when I see him what am I going to do? Those who say follow your gut are right but right now my gut keeps flip flopping. Take time to think over your options and do what is right for you and your gut. Hopefully I can do the same on Monday.

Sent by Cathy | 5:09 PM | 6-16-2007

There will be an answer - Let it be.

Sent by Mina | 9:17 PM | 6-16-2007

Hi Leroy.
By all means, rant!
Sometimes, it gives the illusion of helping, I think really, it does help mentally!
I don't really have anything poignant to share, just a little bit of info I just learned, and I think it's kind of fun, so...
We just got back from Italy. It was my son's "wish" from Make a Wish foundation. (Incredible foundation!) He has a great interest in the Roman Empire history, and I can see why after being over there! Just fascinating! Anyway, we learned that when the gladiators did the "thumbs up" or the "thumbs down", they really didn't do "thumbs down" they did their thumb sideways! If you can imagine the thumb stuck out and the gesture going across the throat, as if to say "off with their head".
Nothing important really that you couldn't live without knowing! Just thought I would share!

In my thoughts and prayers daily Leroy.

Sent by Rhonda | 10:30 AM | 6-17-2007

Leroy: I am new to your "rant" but understand your frustrations and fears. Yes, there are those who do not make it, and yet my own father at 91 survived the chemotherapy and radiation treatment. There is always hope and the power of prayer. Our doctors clinical and research, are so dedicated in the search for a cure. Our generation may not see this, but tomorrow will come and one day a cure. Go with your gut reaction and take with you the obvious caring support from the many, many replies here. (Oh and Vicky, Cyberknife is in Atlanta too). God Bless you.

Sent by Susan Efford | 3:42 PM | 6-17-2007

Leroy
Welcome back to the fight. If Zometa is what you are taking it is not so bad, expensive, but not bad. Now is the time to read and learn all of your alternatives then go with your gut. Mine hasn't failed me yet (x3).
boxing gloves on, chin up, go knock it out again!
Good Luck!
Cheryl
Florida

Sent by Cheryl | 9:58 PM | 6-17-2007

This struck a chord with me: "I always thought that the doctors knew exactly what to do. I guess I had been watching too much TV."

One thing that surprised me when I was diagnosed is that they didn't have all the answers right off the bat. I figured that just from the biopsy they could tell me what stage I was and the whole shebang. Little did I know they would have to keep testing and adding addendums to my pathology report as time went on. I guess I too had been watching too much TV because I figured when he walked in with my biopsy results he would say, "You have stage X cancer, and your prognosis is Y." Instead, the pieces trickled in and the puzzle took quite a while before I could see the picture. And since it's cancer we're talking about here, I don't think the picture is ever entirely complete. All we can do is take the info we have and make the best decisions we can with what we know.

Above all, trust your gut. I had one doctor tell me not to bother with chemo because I was stage 1, but that didn't sit right with me. So I did what my gut was telling me to do and what I knew would give me the most peace. Doctors don't know everything and it's up to us to choose what we feel is right for us. Trust your intuition, Leroy - I'm sure it knows what you need more than any doctor.

All the best,
Susan
http://blog.seattlepi.nwsource.com/lemonmargaritas/

Sent by Susan Metters | 5:06 PM | 6-18-2007

Leroy,

You are one very strong person and others living with cancer, including myself, admire your strength. Cancer has been an amazing journey for me opening my mind to awareness I thought I had and now realize I never did.
Sending healing thoughts and prayers.
Eileen
Stage IIIB Colon Cancer
Diagnosed November 2004

Sent by Eileen Peacock | 1:09 AM | 6-19-2007

It's been a while since my last comments... as for your lists of things to do...make one, and go do everyone you wish...spending time with others would be on my list.. no one can take those special moments away from anyone.

My mother had pancreatic cancer.. I just remember all the good things... no one can take that from me.

I love your strenth,
Richard Williams
Marysville, Ca

Sent by Richard Williams | 8:28 PM | 6-19-2007

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