Cancer Takes Mystery Out of Life

I watched the finale of the TV series the Sopranos on Sunday, and I loved it. For those of you who didn't watch, mob boss Tony Soprano and his family were sitting down to dinner at a restaurant. The director did a great job of toying with the audience, making us think that violence and bloodshed were imminent, that Tony and his family would be killed. After all, that was one of the most likely endings, at least according to the countless blogs about the show. And then the screen just went black. Nothing. You had no idea what happened next, and that was the beauty of it.

You could imagine any kind of ending you wanted. Tony and his family were killed just a few seconds later. Or they ordered dinner, and had, for them, a normal night. Or anything in between. I thought it was brilliant. What happens next is a mystery that will never be solved.

Now I sit here trying to make sense of my latest news, and figure out where to go from here. It's a little depressing, and now I understand one of the reasons why. Cancer has taken away much of that mystery from my life. I liked not knowing where the adventure was going to take me. I didn't want to know what was going to happen next. I never ever look at the last page of a book ahead of time. I don't fast forward to see how a movie turns out. I wanted my future to be as wide as my imagination could make it. Thinking that the future was still to be formed, that there were a thousand different paths that could be taken, all that made me smile.

Instead, cancer has brought too much certainty. I have a pretty good idea of what the next two or three months will be like. And I can guess what will happen after that. I realize that the disease will just keep attacking me. There may be brief respites, like the one I just had, but I expect the assault to be unrelenting. I know what the procedures will be like, what the drugs feel like, how my body will react. I know too much. And like it or not, I have a pretty good idea of how this is all going to end.

So I guess that's why this latest news has made me a little sad. My life isn't like the Sopranos. Cancer, once again, is a spoilsport. It keeps telling me what's going to happen next. And I hate that.

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No, no, no Leroy, please no. Oh I wish I could give you a hug. You still don't know, the ending is still a mystery but perhaps just a different kind of story. You don't know what may happen still though right now it may seem as you do. You don't know with the people you've touched who will make a difference and in what way. Amazing things may happen because of you and you will never know it because it is not ours to know. Now, I realize that isn't the kind of thing you were talking about but life is still that mystery no matter what. You also don't truly know what may happen in the field of medicine that may make it so you are still eating those killer cheesesteaks for 20 more years. I realize it is easy for me to say sitting here with my much more controled cancer. It is easy for me but I still believe it to be true. Now, wouldn't it be a piss if it was the cheesesteak that got you and not the cancer? It could happen you know.

Now this part you can delete if you like. I've been following another Lori's blog for some time. At one point her doctors had given up on her and it looked as if it was over. However, her and her husband did some research and have been using a certain diet. I know, I know...crap you think. I did too but if you read her blog...maybe not. Just look at it and the source she mentions and decide for yourself. I don't believe in miracle cures but heck..could a little flax oil be so bad? http://toosexyformyhair.com/
or look up Dr. Johanna Budwig.

One last comment. My mother hated the ending of the Sopranos. Hmmm.

Cyber hug,
Lori

Sent by Lori Levin | 6:53 AM | 6-12-2007

Leroy,
i keep hoping that if i fight long enough with this cancer, that soon a breakthrough will happen, and a cure will be available, or some new trial will come along. Or really, i could die of some other cause, a car could hit me, i could choke, the list goes on and on. I try not to think that just because i have cancer, that thats whats going to kill me. we just never know. I just take it day to day. I hope you can too.

Sent by Jenn | 7:00 AM | 6-12-2007

Oh, no ya' don't, Leroy. You don't know what is going to happen next. Just when you think you do, the Devil Cancer will rear it's ugly head and whip you around one of those neck-snapping turns you talked about in your blog entry yesterday.

All you DO know is that cancer is in your future. Whether you will be treated with chemo or radiation or more RFA, or something else, or NOTHING for awhile....that you do not know. You could be like my friend who lived 12 years past diagnosis of his colon cancer metastasis. Or your cancer could be spreading prolifically now, and your decline could begin and take your life within weeks or months.

That is one of the things that makes having this disease so difficult. Not knowing is SO much harder than knowing what we are up against.

But, really, life is different for us now only in that we are no longer the naive people we were before cancer. Before, when we didn't have cancer, we THOUGHT our lives were limited only by our imaginations. We thought death was somewhere down the road, way way far in the future...maybe never? We live in a youth-worshipping, death-denying culture, and we had the luxury, before cancer, of deluding ourselves.

No, just like everybody else in this world, we don't know what is in our futures. Not tomorrow, or next week, or next month, or next Christmas, or ever. We DO know that our lives are precious, and not to be taken for granted anymore. And knowing that means we are just a bit wiser than we were before, doesn't it?

Sent by Sandra Shuler | 7:34 AM | 6-12-2007

One thing cancer has taught me is we don't know what comes next. Just when you expect bad news you get the reprieve;you expect good news and you're screwed. Yes, we know how it will end but really everyone does we just are pretty sure it will end sooner than later. I know this is a hard time but remember the roller coaster, remember the whack a mole these are still ahead. So far you have managed your work, your chemo and this blog and that seems to be a pretty full life. Keep plugging away and keep making the most of everyday!

Sent by Dona | 8:05 AM | 6-12-2007

Sometimes knowing what comes next can be helpful if not pleasant. I like to be prepared as it makes things less stressful for me. There will still be surprises for you Leroy, don't give up that hope. You are loved!

Sent by Vicki (FL) | 8:07 AM | 6-12-2007

Amen and again I say Amen,I guess 23 years ago when cancer was first introduced to our family..we(I)had the 18 year respit..in fact they called me cured...but now the last 4 years...not so.Surgerys,scans,chemo(this is the 4th round it you count the one I quit on me own)I said "enough is enough".I have even wondered of late..what would have happened it I had not quit...would I still be alive....do I bother even with the thought.
What I do know is I can develope the imagination of Christ..."to live and suffer is Christ to die is gain. The apostle Puul lived a thorny bush.

Leroy, let your imagination continue..as my grown daughter would say this blog is the best thing since sliced bread. And Thank you for today. God bless us all in this journey.

Sent by Sandy Gentry | 8:31 AM | 6-12-2007

Dear Leroy-
I have nothing of wisdom to add. I simply continue to hold you in my thoughts and prayers.

Sent by Kate | 8:38 AM | 6-12-2007

cancer reminds us to value one day at a time and all those other cliches that people feel the need to say to a cancer survivor. i don't feel that same need. i want to let out a scream of frustration that the whole medical world can hear. this is my life , this is your life , these are our families and loved ones all screaming to be heard. i do not want to die gracefully, i wish to go down kicking and screaming all the way.
cancer has this horrible way of taking away EVERYTHING doesn't it?
i have my scans today...12:15pm. thanks for listening to my frustration and fears! tomorrow, hopefully will be a better day.

Sent by marianne dalton | 8:53 AM | 6-12-2007

I agree with your assessment that the next few weeks or perhaps months will have the predictability that you've mentioned. I remain hopeful that the mental and physical trauma/stress you will endure will produce another respite or perhaps NED. The outcome is not yet written so allow HOPE to accompany you on these next steps of your journey.

By knowing so much about what's to come, it tends to depress us! I would encourage you once again to rally your resources - mental, physical and spiritual - to face the darkness and with the support of your family, friends and all of your new friends here, to bring you into the light once again. It's not over until you say it is over! Your end, the final passage, is not yet written (to carry the theme of the Sopranos's ending). Your purpose in life at this time in your life is obvious to me and perhaps to so many others. You are a messenger of HOPE and a lifeline to so many who have no where else to turn for a sympathetic/empathetic ear and for understanding. God isn't done with you yet, Leroy!!

You know the worst so plan for, hope for and pray for the best possible outcome.

Blessings and prayers as always, Leroy.

Sent by Al Cato | 8:56 AM | 6-12-2007

Dear Leroy/Everyone, yes I agree with your comment about not living like the sopranos. Cancer does take the mystery out of our life. You have a very good idea of whats ahead of you. I for one know because I lost both my parents at a very young age to this dreadful disease and I know and dread what to expect when the time comes and things get worse for my husband. It scares me to death. I need to try and become strong for the both of us.

Hope all goes well with your new journey; you are strong and I have faith in you. Always in my prayers, Sasha.

P.S. At the ending of the Sopranos when the TV screen went Black............I though my cable went out.

Sent by sasha | 9:19 AM | 6-12-2007

Hi Leroy and all,

One of the things I have discovered about cancer is that in some ways it may remove mystery and in others it definitely adds to it - at least for me. At the level of day-to-day experience, some mystery is gone, for sure. I know I am going to die from this ??? or the proverbial car wreck ??? sooner rather than later. I know that there will be doctors, nurses and probably hospital gowns (ugh!) in my future. And I know that at some point the MRI is going to be bad and that I too, am likely to be sent home to die.

But there???s a whole lot I don???t know, as I sit in my stepson???s garret in Virginia, listening to my totally unaware grandchildren laughing, occasionally screeching and gurgling about below.
I don???t know who is going to read this or how you will respond. I don???t know when ??? about a lot of whens. Especially, I don???t know when my capabilities are going to decline and I begin the process ??? and for most of us it is a process ??? of actively dying. I don???t know when I will have to stop writing or become unable to travel. I don???t know when I will have to have others brush my teeth for me, shave me or help me with less mentionable processes. I dread this sort of dependence even more than I do death.

I also don???t know what comes after ??? perhaps the biggest mystery of all ???or how my life will be seen by others, though I have some ideas here ??? and am grateful to have the chance to do something about this. As to after? That is a true mystery. The weight of human experience suggests that there is something. What? I don???t know. We tend to re-create the afterlife, if there is one, in our own images, so who can say, except that it is unlikely to be the conventional heaven-hell dichotomy. Certainly there???s enough hell to go around as it is.

Anyway, Leroy and everyone, I hope there???s still enough mystery to go around ??? even in our crazy, indeed senseless situations.

Vaya con Dios,

John Shippee
Atlanta, Georiga

Sent by John Shippee | 9:28 AM | 6-12-2007

Oh, Leroy, I am so with you on that! Instead of vistas of possibilities, my scope has been narrowed down to a pinpoint.

I am scared and yet eager to have this surgery day after tomorrow. What will the future bring? Not too much for me, I am afraid. It's been a nice run, but too short.

Sent by Stephanie Dornbrook | 9:29 AM | 6-12-2007

Leroy, You are the only person I know that enjoyed the Sopranos ending. Everyone else thought it sucked. The only advice I have for you is to take one day at a time, you really don't know what the future holds. Take care

Sent by Ruth White | 9:38 AM | 6-12-2007

Leroy, I understand perfectly well what you are saying. And, I am very sorry for this turn of events and for your understandable sadness. Still, you might know the direction of where this train is headed, even some of the stops along the way, but you don't know yet the schedule or the quality of the ride.

Hang in there, Leroy. There's still some mystery left and not all of it is bad.

Sent by Marilyn | 9:39 AM | 6-12-2007

Dear Bruce and Sherry, all I can say is Thank you, Thank you, Thank you from the deepest part of my heart. And, thank you for the privilige of allowing me to continue sharing my thoughts with you. Always in my prayers, Sasha

Sent by sasha | 9:46 AM | 6-12-2007

Leroy, I'm so sorry.
I'm sorry that this disease has manifested itself again, I'm sorry that your days and nights are again filled with a constant, what now, I'm just so sorry...
In the midst of everything you are facing right now, I wonder if I could pose a question to you and your many viewers. I know ahead of time, there is no right or wrong answer, and I know it may cause some debate, but it's a question that we are facing and sometimes it's hard to get out of the box and look at the whole situation. It may be that many others are also facing the same circumstances, maybe even you yourself are facing the same question. I would appreciate hearing what yourself and others have to say, if at all possible.

A brief background history...my son, now 15 years old was diagnosed at age 12 with Synovial Sarcoma. Last October, it mestastisized to the lungs. Many chemo treatments later, the tumors are still growing, too many to operate or try radiation. Our list of drugs to try is dwindling, and sadly, our choices are also limited by what insurance will pay for, after all 3 1/2 years of treatments, scans ect have taken a major toll on our finances. The past few times we have been in to the doctor, one of our options is ending treatment. That one is the gut wrencher. That one is the one that sticks in our heads, knowing that at some point we will have to make that decision. That one is the one that once we make that decision, does that mean we are "giving up"?
Yesterday, we were told that any of the drugs he takes will not be for a cure, they will at best slow down the progression. In a very direct way, when the statement was made that basically we are playing the lottery when it comes to picking the next treatment, we were told, "Not really. When you play the lottery, there is a chance you are going to win."
Please, I don't need anyone saying this was too harsh for him to say, this was what we needed to hear, and this "directness" is how we have dealt with everything all along. When asked if my son goal was to "slow down" the process, he said, "I'm not interested in slowing it down". However, that doesn't mean he's ready to end treatment. His belief is one of simple science-every person has a different chemical makeup, which means that what may have worked on another person, or what may have not worked on another person, doesn't mean it may or may not work on him. It's the makeup of his personal chemistry that will determine if a chemotherapy drug will work or not. In other words, this is big, he still has hope. It's much more than that though, it's science. Maybe he is the one that's right, maybe I need to start trying to think like him. That's the thing though, at what point do we step in and make the decision? Do we let this 15 year old boy decide? Are we letting him decide because it's too hard of a decision for his parents?
When do you start deciding quality of life versus quantity of life? How do you possibly make that decision? How do you look at a 15 year old boy, who looks quite healthy on the outside and decide that you aren't going to fight anymore? Is deciding to end treatment "giving up"?

Leroy, we never bought this ticket for this ride, but we're riding anyway. We've had our ups and downs and we know how this ride is going to end, but right now I feel we are hanging upside down on one of the loops and we have to make a decision.

Like I said before, I know there is no right or wrong answer. I'm just hoping to possibly get some clarity, if that's at all possible.

Leroy, you are in my daily prayers. I know you are making your own decisions right now and I know there not easy. PLease know, although I don't communicate daily, I read about you daily, and I pray for you daily.

Sent by Rhonda | 9:47 AM | 6-12-2007

Nooooo!!! You just never know...new treatments come along every day. I know of a 14 year old terminal patient whose dr. woke up in the middle of the night with a brainstorm and now she is being treated again with something totally new. Hope and love of life keeps us looking for the unexpected.
by the way, I'm like Sasha...i thought my satellite went out at the end of the Sopranos! (c:

Sent by Nancy Kelly | 9:59 AM | 6-12-2007

Hello Leroy,
In a way we know what is going to happen, but in reality in my case things keep changing from my past experiences. It has been almost a year since surgery for stage 3 small bowel cancer. This is the fifth time I have had cancer in my 67 years of life. In some ways it has been the same as before but in many ways it has been different....not a good different. I thought I knew what neuropathy was....wrong. I will be having my first big follow up exams next week...endoscopy, ileoscopy and capsule endoscopy. I would be lying if I said I am not afraid. I keep listening to little changes in my body and wondering what they will find. I am having pain where I had an ovarian cancer recurrence in 1997. That scares me because I was told I can never have more radiation on that place in my body. My hands are so tingly and lack the ability to feel the way they should I wonder if I can stand more chemotherapy.
The worst thing of all is that my daughter is just finishing her first series of treatment for uterine cancer. She has been exhausted throughout the treatment and feeling lousy. She will have a PET scan next Monday to see where things go from here. I am more afraid for her results than for mine.
She has two preteen kids who need her to survive the beast. And I still want to know how you can go from an "all is good" annual exam to stage 4 cancer in five months.
I want to know why her doctor can't remember what surgery he did on her from one appointment to the next. I want to know why her oncologist says we may have to put you on Procrit when she is already taking it. Aren't these doctors smart enough to put a little cheat sheet in the front of the patient's file so they don't look like jackasses at every appointment. If they don't have the time to know you and care they could at least put on an act.
Sorry, I am really pissed off about the state of medical care in the area where I live. Most of all I am angry at the cancer.
As you can tell I am not in a good place mentally. The only good thing is that I know we will get our test results and we will deal with them, good or bad. Life will go on and even my bad attitude will get better.
Thanks for listening and hang in there.
I agree with the person who said God is not through with you yet, Leroy. Thank you so much for writing so eloquently about your experiences and sharing your life with us. It is truly a blessing.
You are in my prayers.

Sent by Charlotte Kewish | 10:18 AM | 6-12-2007

Well, for what it's worth and, stealing this from a great little book about hope for cancer patients....Gracie Allen once said, "Never place a period in your life where God only meant to place a comma". Enough said. Hang tough, Leroy. - Susan Schwallenberg from Florida

Sent by Susan Schwallenberg | 10:33 AM | 6-12-2007

We all thought our cable went out at the end of Sopranos. And its kinda of like that when we get bad scan news. We lose our cable connection for a bit. But we get back on track and forge ahead. Go forward Leroy, its going to be ok.

Sent by DiAnn | 10:50 AM | 6-12-2007

Leroy, I share your sentiments. I don't think it's always a good thing to
know what will probably end your life.
Short of getting hit by a bus I'm aware
that this cancer will take my life eventually. My friends don't like to hear me say this and they'll say, well
none of us know what might happen. And
I'll say yes, I do. I'm not being negative I'm being realistic. I'd rather not know, I think I'd like death
to grab me unaware, while I would be totally involved in my everyday life. Not really thinking about something bad happening like I do all the time now.
About the only thing I can say in favor of knowing about your impending
death is that you can get your affairs
in order, do things you have been putting off and say things to your loved ones that you want them to hear.
Even though we should be doing these things all along but of course we don't. I don't think I'm giving up but
I know there is no cure for my cancer
and I'm just buying time. How much time? I don't know, but I'm not going to waste it. Hang in there.

Sent by Susan in Maryland | 11:06 AM | 6-12-2007

I loved the ending also. I figure Tony and his family will continue along in the hyper-paranoid state, never knowing when it's going to hit. That's how I'll be when my treatment is done. But I'm going to enjoy the days in between like you did Leroy. you've taught me to take taht vacation whenever you can.

Sent by Lisa | 11:08 AM | 6-12-2007

Leroy,
I am amazed and bewildered by cancer. It seems to be the mysterious enemy of living things. We are in a an unspoken, unfunded war. We can't stop the war until we can figure out how to conquer it or live peacefully with it. We are thrust into this "other worldly" battle, by our MD's. They are all cocky and make boastful claims of erradicating it or at least securing a DMZ, Mission accomplished. Or the opposite-there is nothing we can do... (my Darfur analogy) What is the truth? It is a devious foe. There are sleeper cells. We must be on constant guard and use heavy assault weapons if necessary. This enemy takes it's human toll without reguard to the collateral damages. It kills silently, indiscriminately. It is as deadly with it's direct hits as with creeping silence. It is those of you deeply imbedded in the mission to speak the truth of the war that rages. Many of you or your loved ones, sit at the front line. Who knows the real body count? You are leading the way. You speak the truth for many of us. I know how deriviative this sounds but it VERY TRUE. You know it is. You must speak and write as you did for other battles you were called to witness. This is a real WAR also. It's just not as well funded.

Sent by Deb Sherman | 11:50 AM | 6-12-2007

So now that the cancer is back you have been given ESP? No way! I have never heard of that side effect from cancer or its treatment.

Hope this gave you some food for thought and made you smile. You take all the time you need to come back to your Team Hope that you started here.

Your lung radiology doctor (sorry I cannot remember his name and I even saw him on your special on TV!!) really fought hard. You never thought you would have the power to zap those tumors or knew of that treatment but hey look what happened - there was a treatment you knew nothing about when you started this journey.

ESP eh? So could you tell me the outcome of the election or the lotto numbers? Again - I am not trying to take away the time you need to react on your journey, just trying to offer perspective and possibly some humor to you today.

Hang in there. You are in it for the long haul and that is really all you know.

Praying daily here for you, as always.

Sent by Melissa T | 12:17 PM | 6-12-2007

Dear Leroy,

You still don't know the ending. None of us does. Cancer has no imagination, no thought process. You can imagine any ending you want and will still be able to do that right up until the ending, whatever it is, plays out.

Remember, you are strong, you are imaginative, you are in control. Cancer messes with our cells, but it can't take the essence of who we are. You have the imagination, the strength, the grace and the humor. You can make this o.k.

Best thoughts only,
Mo

Sent by Mo Spikes | 12:23 PM | 6-12-2007

Rhonda,
Our son completed 2 1/2 years of chemo at age 15 for non-Hodgkin's Lymphoma. I remember well what kind of young man he was at that age and how he had grown mentally and physically during those treatments and the side effects. Since you solicited comments, I feel emboldened to say, let your son decide. Particularly if he wants to continue treatment for all the reasons you mentioned and more that other people have commented on. If he has the desire and willpower to continue - that is the deciding factor in my mind.

I remember the day midway through when our son locked himself in the bathroom and wouldn't come out to go to Johns Hopkins for the scheduled treatment. We went every 3 weeks and he had just gotten to the point where he was feeling better and he knew how he would feel in a couple of hours. After some time of trying everything to convince him to come out including yelling and cajoling, he just got more determined not to. Finally, I sat down outside the door and told him it was his life and his decision to make. As long as he understood the consequences of not going, he should make the decision. In a few minutes, he unlocked the door and said he was ready to go. It was a lesson to me that this really was his decision to make. I think it was a definite turning point in how we each perceived our roles. His father and I went from the deciders to the supporters. We gave him the control he was asking for.

I'm keeping your son and your family along with the others on this site in my prayers for strength to get through each day and healing from this disease.

Sent by Sara (MD) | 12:29 PM | 6-12-2007

Its the third time around for me Leroy. I know how I'm going to feel. I know everyone will say how great I look. I don't know if it'll work this time. I do it and hope.

Sent by helen | 12:44 PM | 6-12-2007

I welcome your honesty.
amh

Sent by Anna Harmon | 12:52 PM | 6-12-2007

Hi Leroy,
I have been wanting to write you ever since I saw your documentary. It was like living my journey all over again. Your descriptions were exactly how I felt and still feel. Cancer gets factored into the smallest details of my life - even down to buying a new pair of shoes! I was diagnosed in 2003 with Renal Cell Carcinoma (kidney cancer). After 6 month checkup - mets to both lung fields. My prognosis was 8 to 12 months. I went through every emotion you did. It was so amazing to hear all this from you. There was so much panic and you are right, you just can't keep up the energy. I sort of reached a level of acceptance. I was sent for Interleukin II (4 hospitalizations). It did not work for me. I asked the oncologist "is there anything you can do to give me more time". He said there was a clinical trial going on and that he didn't know the physician and only knew that the drug was showing some promise - so off I went. I have been on the drug for 3 years now. I have scans now every 4 months. As you have talked about, scan time is the answer. I become so nervous that I can hardly think. But this will be for the rest of my life.
You are so brilliant and so real. I look forward to your blog every morning. It is good to feel "so normal" in this tough cancer world. My special thanks to you for the documentary!

Betty Lewis

Sent by Betty Lewis | 12:55 PM | 6-12-2007

I thought the Sopranos ending was great also.
Leroy, You have options here you know. You can simply give up and do nothing. That ain't gonna happen though, is it.
Now we narrow it down to other available options. Just keep fighting.
And just maybe there will be more options pop up. None of this is news to you, now is it?

Sent by Lou Mayers | 1:02 PM | 6-12-2007

Hi,

This is the third go-round for my mother also, with surgery, chemo, radiation, white cell shots. She had a brief respite of a year when we all thought we had a bonafide miracle. We haven't stopped believing in mystery or miracles, though. It can still happen. It happens everyday. New cures come along, treatments that once did not work somehow DO work. That's what I'm praying for and counting on. She wasn't sure she could tolerate this last round. I know it has been sheer hell, but selfishly, I told her...."I don't care what you have to do.. I want you ALIVE. That so many of us love her, even selfishly, gave her the strength to fight again. I can't help it - she's my mother, I love her with all my heart and I want many more years with her no matter what it takes. I know that is asking a lot, and sometimes the pain overcomes the will of the person affected, but again, we can't help it. We all love you too, Leroy. Don't ever give up, don't ever give in. You are loved by and prayed for by countless people. There IS still mystery out there in your life. You have no idea how many people's lives you are impacting right now simply by sharing your experience with us; how much inspiration you give people, how much hope. For many people, YOU may be their miracle, their reason to get up and go at it again, no matter how disgusting, depressing, and painful. I pray for everyone here. May God bless and comfort each of you.

Sent by Connie | 2:02 PM | 6-12-2007

Leroy, I don't know what others have written you. But the mystery is not over, if you think about it. I am not a religious person, but nothing ever fell out of the universe. That spark that keeps you alive, that keeps me alive, something happens to it. Perhaps it is subsumed by Everything Else, perhaps you don't retain a discrete "self" (or hey, maybe the baptists are right and I'll find myself standing at a pair of Pearly Gates)but the greatest mystery is yet to come. Getting there is unpleasant and I am concerned for your happiness. But I believe that out *life* doesn't cease to exist. You've done so much good here. You can keep doing that. And while you wait, the mystery of Here and Now is very deep, eternal. The most beautiful and terrifying days of my life were spent waiting for my pathology report, bracing for the worst, and making myself really experience my existence. Tears for you to be sure. But don't say it's over. You just don't know that.

Sent by Alycia Keating | 3:02 PM | 6-12-2007

Hi There Leroy,

I have read the many postings on your entry today, and pretty much say the same thing..... SNAP OUT OF IT! You can picture the Mary Englebrecht character with her hands on her hips, and that scowl, can't you! Here's the scoop, and although all have said it in one way or another, you CAN'T HEAR IT ENOUGH. No one knows how long we have on this earth. Absolutely NO ONE! If someone did, they would be very rich I am sure.

Now you have picture me pulling out a soap box, getting up on it, looking down at you, and shaking my finger.... CONTINUE TO FIGHT! If you have that phenomenal crystal ball (you alluded to it), please check it out and tell me if I will be getting married soon, PLEASE!

Yes, cancer sucks. Yes, the roller coaster, or rat wheel whatever you call it sucks, the fact that you will constantly be having follow up tests, scans or whatever sucks. You can and had better live until the end or less.

That said, I am off my soap box, putting it away for another day.

Thanks to all, for your great words.

Sent by Susan Chap | 3:07 PM | 6-12-2007

Sometimes I feel like I am in human misery overload, with working in a cancer center and having my Dad at home with end stage prostate cancer. Then I come to this site, read everyone's posts and wish I could sit with each person and talk about what I can do to help. Stephanie, I am wishing you the best on your upcoming surgery. Rhonda, my heart goes out to you and your family as you continue on your difficult journey. Leroy, you do have an expiration date...we all do, but you are not on the shelf to be tossed just yet. We need you to keep us talking and supporting each other on this journey. Blessings to you all this day.

Sent by Karen | 3:15 PM | 6-12-2007

Leroy, The mystery makes life more fun, the ability to dream, to plan, to ,well, make that next vacation plan. Fading to black is okay for the end of the Sopranos, but for us, I think most of us know the ending.

This journey is something only another cancer patient can understand. The things you face, the tests, the waiting, the news, the next plan. It all seems never ending, with all too brief breaks. Being sad is what I would expect, how can one not be sad, after hearing that kind of news. We are all with you in this fight. In the words of Al Davis. " Just win, Baby." Stan

Sent by Stan Wozniak | 3:34 PM | 6-12-2007

Leroy, This try#4. Some glitch won't let my post get through.

ANYWAY, I never saw the Sopranos, but I am familiar with endings of another ilk that upset people.

When I end (die), I want to be as graceful as I can be for those I will leave behind as well as for myself. I will feel better about it if I do "a good job." It is, after all, my last main task in life.

I don't like the uncertainty of cancer because I HATE LIMBO, but if that's the deal, I hope I can deal with it.

Mostly I want to give and receive love with those who are important in my life, say whatever I need to say, and then go.I believe love is more important than cancer and if I can focus on the one rather than the other, it will be better in some way I don't fully understand.

Sent by Diana Kitch | 3:38 PM | 6-12-2007

I think we grieve along the way so I hope you are able to be with your sadness. Each time I think of chemo my mind screams NO! My heart says keep going. No one knows the best course of action for you but you - but I do know I simply would not be here if it wasn't for the love of my family and friends. Surround yourself with those dear ones. You have the right to be sad. This stuff really sucks. Keeping you in my prayers...Kay

Sent by Kay | 3:41 PM | 6-12-2007

Leroy,

Dang it all, you finally made me cry.

But after reading about the unknown, the only thing that ran though my mind was Madeline Kahn singing "Sweet Mysteries of Life".

I gain my perspective wherever I can I find it :o)

Lean as hard as you need; we can take it.

Sent by Teri Thomas | 4:11 PM | 6-12-2007

Not to be morbid, but I haven't seen anyone mention the word "hospice." Hospice is a treatment concept, not a building. To make an inquiry of a hospice program doesn't mean you are giving up. You don't have to sign up just because you ask. Hospice personnel have seen what you fear many times, though from a professional rather than a personal perspective. They are trained to educate and counsel patients and families. Google "hospice" and you'll find lots of usedful information.

Ruth

Sent by Ruth E. Ratzlaff | 4:41 PM | 6-12-2007

I was on a raft trip last week and missed your posts. On Monday, I frantically skimmed through the week looking for your results. I feel so sad that you are going back in there again. I don't think you were wrong or foolish to have hope. What is life without it?

Sent by Marcia | 4:50 PM | 6-12-2007

Couldn't resist sharing this & hoping that you Leroy will find your next reserve of strenght & know what you do here is so very important for many . To contribute in a small way to help lift your spirits would be an honor. After my husband's CT scan results last week we had a hour drive home to begin to digest the very poor results. Results were that it is time to begin with the cancer drug (sutent) for renal cell kidney cancer that is quickly & aggressively spreading through his lungs & kidneys. [Betty Lewis if you are still blogging/reading please post the name of your medication.] He was able to say his goal(s)are to stay around for some more time with unfinished business in our children's lives. Specifically, to see his youngest son gratuate high school in 1 year, oldest son gratuate college in 3 years and his humor is such that he thought about telling our daughter he wanted to stay around for her marriage which we are hoping she will be single forever but that's really due to her choice of a boyfriend. Holding you in our thoughts and sending a virtual hug!

Sent by Cyn | 4:59 PM | 6-12-2007

Leroy - I haven't had a chance to write since you got the results from your scans. I had scans the same day and had hoped for better results too. The best I can say is that they weren't worse than before, but they're not any better either. The "scan, review results, repeat with more treatment" cycle gets pretty old after you've done it for a while and it's pretty hard not to start getting a little discouraged. This will sound repetitive and you've heard it at least a hundred times by now, but I'll say it one more time - as much for me as it is for you - don't ever give up. As discouraging and bleak as every one of these setbacks is, there's always a little bit of hope that this time it will work better. Maybe not forever, but enough so that you can get through it for enough time that you can get back to Hawaii again for another vacation or maybe a couple of vacations. If you've got the energy, step away from the laptop and pick up those drumsticks and wail away like you're Buddy Rich beating the hell out of your tumors.

To Stephanie Dornbrook - good luck on your next trip to the hospital - we're all pulling for you. Write back to us and let us know how it went when you get a chance.

A final note - one of the cancer blogs I follow desribes cancer as a "gift", and maybe in a way it is. I'l admit that it's brought a certain clarity to my view of life that I didn't have before I was diagnosed. But I think I've gotten as much out of this "gift" as I want to have, and I'd like to return the gift for a refund. I do not want to "re-gift" this to anyone else. It just needs to taken out of circulation for good.

Sent by Bob Maimone | 5:11 PM | 6-12-2007

I think this a giant science fair project. None of the doctors have the answers not a clue. They all eventually end up asking us what do you want to do? This whole experience has sucked since day one. No one is better because they have cancer. People don't change just because they have cancer. If you were a good person before cancer you are still a good person & if you were a SOB you are still a SOB. Yes you could get hit by a car, but the chances are you won't you will die from cancer. We have been on this ride since 2/8/06 when the doc showed us the chest x-ray with the baseball sized tumor in it. Tests & more tests then surgery then chemo then chemo side effects, then living with one lung then scans every 3 months and then and then!! He has lived past the average life span of a stage 4 lung cancer patient which is 8 months by 8 months & just when you start to think the beast is at bay, bad news awaits just around the corner. Well, he is at 16 month survival & he did get to have a wonderful Thanksgiving with the kids, saw his first grandchild 1 hour after her birth, a wonderful Christmas with all the kids, his 64th birthday, another trip to see that beautiful grandchild, my birthday, and a week long visit with the grandchild. Excuse me for wanting more, excuse me for not being appreciative of the last 16 months, excuse me wanting my husband to walk our daughter down the aisle at her wedding this coming Feb. I hate this monster, I wish I could kick its ass. I hate what it has done & what it is going to take away. I too hope the boys in the basemnet win, I just wish I knew what to do to help them.

Sent by Kathy | 5:13 PM | 6-12-2007

Leroy

It seems to me you have indeed "jumped to the last page" in the assumption of knowing the end?

The mystery remains in your life Leroy... it may not be the mystery you wish for.. but the truth is you do NOT know where this trip will take you or how it all ends!

You said yourself... "Now I sit here trying to make sense of my latest news, and figure out where to go from here.".... that my friend is mystery!

I don't wish to sound admonishing either... you are very much entitled to those feelings.. you have every right to be deeply saddened, disappointed, discouraged.. but look beyond all that Leroy

You have OPPORTUNITIES in your life even today and even given your circumstances.... you have many options regarding your cancer... some good some not so good... you have created an incredible COMMUNITY here with this blog and there are many opportunities here.. opportunities to help others and to learn from others...

You are very obviously deeply cared about here.... as was said... LEAN ON US for a bit here.. you will find your strength and mystery again Leroy!!

You are in my thoughts and prayers

~Ron

Sent by Ronald K. Bye | 5:26 PM | 6-12-2007

Dear Leroy,
I am so sorry about your news. I also have colon cancer stage 4 - had colon surgery, liver surgery and 10 months of chemo - was fine for 1 and 1/2 years and just like you said the last 3 month scan that I dread like you showed a small tumor in my liver once again. You have such insight about how all of us feel about cancer, and getting it back again. I really enjoy your blog and think it is so important to all of us who are going through the same thing. Hang in there as will I!

Sent by Andrea Bunsa | 5:55 PM | 6-12-2007

Cancer just plain sucks. Period.

Rhonda - there's not a right or wrong answer. Your 15-year old (God bless) is probably much wiser than most. Sadly, cancer has probably forced him to grow to the emotional age of a senior citizen. A 15-year old shouldn't be faced with these kinds of issues. It pisses me off just thinking about it.

As far as which path to take, the best advice I can offer is to follow your heart. If you are a peson of faith, I think praying may help. If you are not a person of faith some meditation may help. Probably kind of hard to just clear your mind and ponder the options though. I understand. I think at this point reason has exited the equation. I would invovle your son in helping to make the decision as he has a very large stake in the outcome. I wouldn't go into the financial implications with him though.

I'm not big on the "whoa is me" or "life's not fair" perspective as, in the end, it's not too helful. But man, how much burden is a human supposed to have to shoulder?

Leroy, try to take things one day at a time. You sound down and you have every reason to be. I would be lower than a snake's belly. But, you've helped an awful lot of people. You have a purpose in life. There is great value in what you are doing on this blog. You have done more good in your blog in one year than I will probably do in my life. I hope that gives you some feeling of accomplishment. You have a lot to be proud of and live for.

You can't fix the problem in one day or one week or one month. Little bites. Baby steps. I know. It's all so much bullsh*&. We're with you, brother.

Sent by Dave U. | 6:18 PM | 6-12-2007

Your blogs and podcasts have been very special. My sister-in-law has (SNUC) in the maxillary sinus. It's hard to imagine just what she may be thinking and feeling through the hours and days and weeks. As I read your posts and listen to your podcasts, I believe it gives me a little window into her heart. Your very real presentation of procedures, fears, feelings gives me the opportunity to deepen my understanding of cancer and all its' facets. Thank you.

Sent by Marleen Salo | 6:26 PM | 6-12-2007

Leroy, I hate that cancer takes away that mystery too. I appeciate everyone's positive posts above, but I also hear you. It's a nasty disease and it limits your options. But maybe it's the unexpected and mysterious in the ordinary you will find in the middle of all the treatments. I hope so. You are in my thoughts.

Sent by N.R. | 6:35 PM | 6-12-2007

To Leroy and Stephanie Dornbrook: I had my first MRI last week and waited 5days for the results. They came yesterday and I am clear for now. My surgeon said he dreaded reading the report and having to call if the news was not good. For the past week I have not read the blog because I needed a break. And now my elation has been replaced with such sadness for two wonderful people. I know my future is bright now, for awhile, and I pray with all my heart that you two can find some comfort in the prayers and heartfelt feelings that are coming your way. Stephanie; I am so in awe of your courage and your grace. Leroy: Please don???t give up. You have been such an inspiration to me and to all of us. God be with you both. What else is there to say except that you are both in my prayers and on my mind?

Sent by Patti | 7:22 PM | 6-12-2007

Hey Leroy. You don't seem like the type to give up. and to me that's kinda what this one sounded like. Here's how I see it. Cancer has tried to make the decisions for you for a while now. Rears it's ugly head and then you fight and put it back in it's place. The ups and downs of this trip are crap. I agree. But as for the ending? Come on now. Your giving cancer way to much power right now.
God Bless Leroy.
WE are all here fighting with ya..
Christine

Sent by Christine VanHoose | 7:39 PM | 6-12-2007

Leroy looks like this will be a week of questions hopefully to be answered good or bad. I know I await CT results, you await your desions and Stephanie will be finding out her results after surgery on Thur. So let's all get together and think good thoughts and pray for one another.

Sent by Cathy | 8:09 PM | 6-12-2007

Dear Leroy, Your posting today prompts me to share a narrative I was asked to write re my experience of cancer. It mirrors many of your feelings and, to the extent that suffering is sometimes lessened by the sharing, I hope it provides a small faint consolation that you are not alone.

"My Story"

I have ovarian cancer.
As I was walking through the airport a few days ago I likened my condition to the recorded announcement that our country faces a "Level Orange" terrorist threat. For me, this threat is internal and the terrorists are microscopic, insidious and capable of disrupting my fragile sense of well-being without warning or recourse. The announcement continues, urging me to keep a vigilant eye on my belongings and report any unattended baggage. These days, my baggage, which I am continually scrutinizing, has become all the physical quirks and fleeting sensations, once casually dismissed, that now have potentially ominous implications. Was that just a cramp or could it be a bowel obstruction? A moment of dizziness or a brain met? Just as the terrorist attack on our country robbed us of the illusion of security, safety and invincibility in our public spaces the diagnosis of cancer initially shatters the vision of an unlimited future and an ongoing predictable ordinariness in the cycles of life. Everything changes.
This disease crept up on me with little drama or fanfare. Cancer is a lurker; it takes a stealthy approach; it accrues, then pounces. The holidays seemed more daunting than usual. I was tired and slightly bloated. I called my internist in February (retrospectively, 8 weeks after becoming symptomatic) because as I've aged I follow up on these small signals more conscientiously, albeit with a burdened and long-suffering ???I don???t have time for this??? attitude.
The physical exam was unremarkable but my CA125 was stratospheric. I had surgery within 3 days. Valentine's Day. I'm from Chicago; there was a massacre on that day during Prohibition. My cancer surgery commemorated it for me.
Then, there was the aftermath, the real battle. I went unwillingly to war, a draft-dodger at heart, having no choice but to arm myself with bits and pieces of information, folders full of drug studies, trials, second and third opinions. I encountered a wide array of personalities along the way--those who endorsed a "reality morality" which torpedoed hope more effectively than any car bomb could decimate a flower market--and those whose initial caution was alloyed with an enduring optimism and creativity that pried me out of my foxhole and vitalized a host of battle strategies. I???ve had a lot of excellent treatment in the past sixteen months, won a few skirmishes, weathered some casualties. I???ve learned that the enemy is a guerilla force, adept at ambush, living among us undetected.
But does one ever ???win the war??? on cancer? Or terrorism? If the goals are containment, control and preservation of function, perhaps we can achieve some limited success. But mainly we live a life of calculated risk, taking precautions, usually flying to our destinations unscathed. Or sustaining sufficient health to attend the next chemotherapy session. Complete eradication? It smacks of a pogrom mentality to me. No one has ever been very successful at ethnic cleansing and in the process nothing but tears and a ravaged landscape remain. I am aware that my cancer, like the Chicago gangsters and the middle eastern zealots continues to plot with criminal and deadly intent, my demise. But I have managed to compartmentalize cancer and refused to be defined by it or by my fear. In the meantime I???ll gain more understanding of its violent nature.
So cancer and I are attempting to strike a truce: It can lurk as long as I can work. It can live its own little life as long as I can live my bigger one. One of us will eventually succumb and it will probably be me but in the interim I hope we can find a way to coexist without excessive compromise. To me, that???s winning.

Sent by Sally Jenkins | 8:27 PM | 6-12-2007

Leroy,
please check out the macrobiotic diet!
There is a 'way to health' every month at the Michio Kushi Institute in Becket, Massassuchetts. Macrobiotic has had incredible successes with definitive remissions of cancers, even stage 4. Please, see a counselor there to help you strategize your diet. Even if you believe your cancer is genetic...

Sent by Satya | 9:27 PM | 6-12-2007

Leroy,
You own your feelings and deserve the right to express them. Am thinking about you and remembering yr blogs from Hawaii.... It's gonna be all right, whatever happens, I promise you. BIg love from my neck of the woods. from Sherri in Texas xoxoxo BC dx 4-06

Sent by Sherri Eggleston | 9:58 PM | 6-12-2007

why is it so hard for people to allow Leroy his feelings? Is it really about him or about you? it is bad enough that we often have to deal with non cancer patients saying cliches and platitudes because they do not know how to deal with their own grief, but it would be nice if people with cancer could allow for the grief and sadness that comes with confronting your own mortality...it is not for us judge but to share.....

it sucks Leroy.....

Sent by Yvette | 10:25 PM | 6-12-2007

For Cyn from Betty Lewis
I am taking Nexavar for Renal Cell Carcinoma (Kidney). If this treatment fails I will probably then begin taking Sutent. I think Nexavar was marketed about a month ahead of Sutent. I hope your husband gets great results with Sutent. Again, Leroy thanks for sharing with us.

Sent by Betty Lewis | 10:39 PM | 6-12-2007

I've also had recurrence of breast cancer within the month. Had been about 2 years since chemo and radiation. The cancer has returned, and now it's back to being more aggressive with weekly chemo treatments. It's beneath my sternum and growing around it, out through my chest. No surgery or radiation can be done, just chemo now. It's not fun, don't like it at all. But we continue forward, if only for our teenage son. Yes, cancer sucks.

Sent by Jane | 10:39 PM | 6-12-2007

True, you never know what life has in store for you, but you must be careful what we wish for. My husband has been fighting the good fight with colonrectal cancer since 12/11/02. We thought we were doing all th erigth things. This weekend showed us that cancer can have a mean ugly face. David has been on Avanstin for almost a year with some other chemo drugs, this weekend we had to go to the ER, we found a blockage inthe sm. intestines and there was the beginning of a perforation. the infection moved into the left flank. He had to have emergency surgery (2) and we found out tonight that this problem is one of the side affects of the Avanstin. Watch out for those wonder drugs.
I am with you it was a great ending to the show..there are not enough people who have an imagination any more. This was just like life.

Sent by Karen | 11:04 PM | 6-12-2007

OK - we understand you are bummed out because of the bad results - both my husband and I have cancer, so I can really relate. You feel you've been betrayed. My trick is to only let myself wallow in it for a day or so, and then it's time to get my head on straight and do what you gotta do. Nobody's gotten out of this place alive that I know of, and you and I won't either. But neither of us know when. So, if the treatments get you really down this time, what about a little antidepressants for awhile? Better living through chemistry, you know.

Sent by Jeanette Carney | 11:35 PM | 6-12-2007

Leroy- with all the cancer you've had, the real true mystery is how you're still alive. Think about it- anything can happen- your life is an open book- maybe a shorter one than you want but still it is open.

Sent by Linda T. | 2:21 AM | 6-13-2007

Thank You Betty for sharing your story & the drug information. Best wishes for your continuation & here's to successful drugs to battle cancers!

Sent by Cyn | 11:55 AM | 6-13-2007

"I believe in the sun, even when it isn't shining. I believe in love, even when I feel it not. I believe in God, even when He is silent."
~Written on a wall in a concentration camp

...I always enjoy your posts Leroy.

Sent by Gabe | 12:06 PM | 6-13-2007

Even though cancer thinks it's telling you what is next, it's not. It can't dictate your life, it certainly can lead you in a certain direction, but cancer doesn't have the final path picked out.

Sent by Cynthia Vissers | 11:36 PM | 6-13-2007

Dear Leroy
Keep your spirt strong...God spped to you on your treatment

Sent by ellie wingerson | 11:55 PM | 6-13-2007

For Cyn:

There's a newly approved drug for advanced renal cell carcinoma called Torisel. The generic name of it is temsirolimus. I've been working on it all week.

If you want to read about it, the web site is http://www.wyeth.com/hcp/torisel

It's written for health professionals, but if nothing else you can get the package insert and take it to your doctor if you think it might be helpful.

Sent by Bruce | 4:21 PM | 6-14-2007

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