Commentary: Waiting for Test Results

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The following is a commentary from Morning Edition, July 24, 2006:

It's the waiting that's the worst. Or maybe it's the fear of the unknown that's worse. Maybe it's all just bad. The life of someone who has cancer plays to a very different rhythm. You go from one cycle of chemo to the next. You don't know if it's working. It just takes on a life of its own. You get a little shortsighted, counting the days until your next break.

In some ways, taking chemo is an act of faith. Until the doctors take a look, you just have to hope — or maybe even believe — that it's working. Because as unpleasant as it can be, it would be doubly unpleasant if all the nausea, all the fatigue, all that was for nothing.

Now there's a blood test for a cancer marker that you take every couple of months. When I started chemo, I had a score of 21. Then it went to 14, and then seven. Zero, of course, means no cancer. I was excited, the doctors were excited. Everything seemed to be going in the right direction. Until they did the scans. No change in the tumors. That blood test can mean a lot of different things. In my case, it meant nothing.

The scans are the real markers. Those you have every couple of months, too. They're painless, except you have to drink a really foul mixture of chemicals and raspberry-flavored drink. I assume someone at the hospital thought the raspberry drink would make the concoction go down easier. It doesn't. Trust me.

Basically you get run through a machine for a while. And then the games begin. The technicians are instructed to tell the patients nothing. Trained radiologists have to read the scans, and they don't want a technician to give the patient bad information. The official results don't come in for hours. So of course, you, as the patient, try to trick, beg or grovel to get some kind of hint. You try to look at the screen over the tech's shoulders, as if you had any idea what you were looking at. You ask if they see anything big. Usually, though, they go by their training and give you nothing.

And then, after hours that seem like days, the doctor will come to tell you what he or she saw. Again, you're desperately trying to read the clues, sort of like in a poker game. Except it's a game where the other player has all the cards. The doctor knows.

And then you know, for good or bad. And even if the news is bad, it really is better to finally know. At least that's what I tell myself. These days, I don't really get nervous until the doctor comes in. The news is usually so uniformly bad that every time, you just hope for a little bit of hope.

Why am I thinking about all this? Because I have my scans next week. And maybe there'll be some good news, right?

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I am a breast cancer survivor, and at the same time, my husband is going through chemo for liver cancer. We were both diagnosed within a couple of months of each other. We are survivors and I also keep a blog, as a form of therapy. My blog is here.

Every day I am touched by angels, people who have come into my/our lives who, had I not been diagnosed with cancer, I probably would never have met. Good things can come from bad situations. God bless you.

Sent by Jane Kaminske | 10:50 AM | 7-24-2006

No doubt about it, Leroy, everyone (like me) who is avidly following your blog posts are going to be watching for the good news!

Again, thank so much for even doing this marvelous sharing of your (real) life with the world. By making this very gracious gesture, you are helping people far more than you know.

Sent by Erika Brown | 11:12 AM | 7-24-2006

You hit it on the head!! I'm in my 2nd bout, and have a non-reducing-size *mass* too. All you can do is be positive. My support group has ladies who have survived for 20+ years. I can only hope that, eventually, I will be one of them. Keep the faith!

Sent by Harriet Marvin | 11:14 AM | 7-24-2006

Leroy,

I'm a fanatic NPR listener so I'm disappointed that I haven't previously heard your broadcast or known about your blog.

But I have a good reason for having been out of touch. I was diagnosed with breast cancer in mid-February 2006 and my "normal" life pretty much stopped then. (Turns out its Stage IIIA, fairly serious.) I am still in chemo, but am now starting to pay more attention to the world around me.

I have bookmarked your blog, and plan to read from the beginning, with great interest. Should you or NPR listeners be interested, my husband and I also started a blog at the encouragement of friends. It's at http://www.bcvj.blogspot.com/.

Should NPR not publish this comment in your blog, I hope they send you my comment and let you know that I will be following your story, and that I understand all too well how scary this journey is.

Sent by Venita Wood | 11:16 AM | 7-24-2006

I appreciate your commentary and blog, mostly because you tell the story that I have grown accustomed to. My loving partner of 16 years was recently diagnosed with an advanced cancer that has spread to many parts of her body. Since February, we have been in a battle for her life, and it is difficult to watch and to know how to react to the ups and downs of my partner's emotions and mine, the weekly reports from the doctors, the medical bills, the fear of losing her, the pain of watching her suffer and the disruption of lives moving away from any semblance of schedule or routine.

When my partner was first diagnosed, we were given a detailed description of the cancer, and were handed copies of the PET and CAT scans. Since then, after many different scans and tests, the results have been glossed over and the details have gotten sketchier and sketchier. Just exactly how much shrinkage has there been in the liver? How many brain tumors are showing this month? How big are they? What about the adrenal gland? Has there been any change there? Why not hand us a copy of the latest tests, so we know exactly what kind of improvement there has been?

Why don't I think to ask these questions when we're sitting in the oncologist's office? Sometimes I do, but we are never handed a copy of the scan results' and we just nod our heads as the doctor tells us that there is improvement here or there, but never recites exact details. Other times I am so overwhelmed by the experience that my mind just shuts off in the examination room.

It is scary to walk past the receptionist area and see row after row after row of bulging file folders lining the walls there. The intimidation begins right then and there. The oncologist's suite is a hectic place - people coming and going, a line of individuals moving across the scales and into the lab to have blood taken, then out into the hallway where we are guided to the examination room, past the chemotherapy suite, filled to capacity with other ill people. By the time the doctor arrives in the patient's room, I am totally depressed by the sights and smells encountered just walking from one side of the doctor's suite to the other.

After seven sessions over a period of 5 months, my partner has finished up her chemotherapy and will soon be moving on to radiation. But she is sick and tired of being sick and tired as a result of treatment. She wants to continue her Ph.D. work, but knows that, in her current condition, she will never have the stamina to complete another semester's worth of work. She misses her real life and hates the pity she sees in the eyes of others glancing over her balding scalp. And me? I miss seeing her happy and healthy, and I fear for our future.

Sent by Becky Rude | 11:23 AM | 7-24-2006

You should air more pieces of this sort on Monday mornings. Mr. Sievers' commentary helped me understand that even in my droll often routine existence of late, I have much for which to be thankful.

What is the title and artist of the instrumental you used to end this piece?

I would very much like to add it to my collection.

Sent by Michael Robinson | 11:27 AM | 7-24-2006

I have been in remission for over a year now from NHL and things could not be better. I had six chemo treatments and they went fine, though complications arose from the port installed. My doctor was just the best and made a big difference during and after my treatment.

Sent by Ryan McCormick | 11:30 AM | 7-24-2006

Leroy,

After listening to your commentary this morning, I was compelled to respond. I have occasionally caught some of what you have been sharing with us. I can't possibly know what you have been going through with your struggle to regain your health. But I can tell you that your commentaries have helped me think about many deep issues. I would like to preface the following thoughts by saying that, though I consider myself a spiritual person, I am not religious.

Faith is a concept that is all too often thrown around in ways that weaken its meaning. To me, it does not function as some independent influence on one's fate. I believe it is inextricably tied to one's purposeful, often selfless acts in life. If faith is going to play a role in your journey, then it has been strengthened by sharing your struggle with cancer.

Faith is also expressed both as an individual and collective conscious act. Your commentaries have allowed us, if only in small ways, to participate in your experience. When you ended this morning's commentary asking "And maybe there'll be some good news, right?" I responded (out loud, mind you) "right." I'm sure they were many others who did so as well. So you have asked us to help strengthen your faith this morning, and we have done so, not out of pity, but willingly and hopefully because of what you have offered us. If faith is going to play a role in your journey, then take heart in knowing that it got a collective boost this morning, right?

Sent by Paul Rubeo | 11:33 AM | 7-24-2006

It happened to me back in May of 2001. I went to see my Doctor because I had testicle pains. Well, this lead to testicular cancer. On June 29, 2001, I have surgery to remove my right testicle, which I thought was it; let's move on! No, I was wrong; this was just the start of a living hell.

I started chemo in August of 2001 ? which ended on October 31, 2001. I went for 5 days a week, for 8 weeks of chemo treatments, which were 8 hours M-F one week, and then 8 hours M-Th and 3 hours on Friday the next week. Then it started over again 8 hours M-F, then 8 hours M-Th and 3 hours on Friday.

Every 3rd week I went in for tests because my heart was being affected by my treatments. I was on over 16 drugs. At one point my white count fell to just below 1000 which could have landed me in the hospital, but I was given some shots (2 by myself) which kept me out of the hospital, but the drug they gave me for this put my body in a rebuilding phase which caused me a great deal of pain. My whole body hurt...

During these two months I was told the chemo treatments I was on were rated the 3rd hardest to be on without radiation. I lost all my hair by the 2nd week and lost all my taste of foods or drink by the 2nd ? 3rd week. Everything I ate or drank tasted like copper. I ended up with sores in my mouth which the doctors told me is like a yeast infection, which caused any drinking or eating to feel like fire. When people asked me what was this like, I told them, like a living hell, and if cancer comes back I do not know if I would go through this again??

I went for CAT scans and blood tests every month at first. I could not drink the white stuff they gave me. It made me so very sick I ended up drinking something clear which tasted like hell but I kept my food down.

As of April of this year I was given the green light meaning I am cancer free. I still think about it and the 2 months of hell I went through, and have not yet gotten to that point to say, hell, I made it!!! Because I think it may come back. I got a lot to live for, 3 boys, a wife and a new home, but I still think about what I went through since it happened to be a year after my father passed. It just makes you think.

Tom Wilson

Onsted, Michigan

(Former Detroiter)

Sent by Tom Wilson | 11:37 AM | 7-24-2006

Hello.

I was sitting on my sofa, having gotten up very early so that I could get a cup of coffee in before I have to start fasting. Well, really — I'm up early because I can't sleep. You see, I have a post-treatment CT scan scheduled for this morning. It's been seven months since I completed my chemo and radiation therapy for my Stage II Hodgkins' lymphoma that was diagnosed on June 3rd 2005, and I'm worried about the results of the scan.

I have only two weeks in which to finish the draft of my Ph.D. dissertation before I leave for a long trip overseas, and I desperately want everything to be ok so that I can get on with my life, many aspects of which I had to put on hold last year so that I could undergo the treatment that my doctors and I hoped would save it.

... so, when I heard Mr. Sievers begin his monologue this morning, I couldn't believe the timing.

I listened with great interest to his recounting of the "scan experience," nodding quietly. We don't get any fancy raspberry drink here in New Mexico, just the nasty barium sulfate, but otherwise the experience is just the same. He didn't mention the rising nausea that results from a combination of drinking the foul barium sulfate, feeling the injected iodine solution move through one's body during the actual scan and wondering what the news will be ? but anyone who has had a CT scan during or after cancer treatment will remember.

I feel much empathy towards Mr. Sievers. Before my cancer diagnosis, my life had a normal, comfortable rhythm. Now, like Mr. Sievers, my life follows a rhythm that is to some extent dictated by someone else (my doctors), and something deep within me (lymph node cells that once ran amok, and others that may do so in the future).

Okay, I'm taking a deep breath. "Scan days" for me are days of great dread, and of great hope. I found out that I went into clinical remission after my scan almost exactly a year ago, and hope that the news will be just as good after today's scan. If not, well...then it's back to the drawing board.

Either way, I'm still going to have a nice pint of Guinness in Dublin next month and I'm still going to give my doctoral defense in October. Now, there's only so much havoc that I will allow cancer to wreak on my life, and no more.

Sent by Karen Gaines | 11:45 AM | 7-24-2006

My mother and I are both fighting battles with ovarian cancer. I just wanted to let you know how much your commentaries have touched us. You are doing a wonderful thing by sharing your experiences. We have felt so many of the same things, but have never heard them so well expressed. Thank you.

Sent by Bickie Beckham | 11:49 AM | 7-24-2006

This week marks the 10 year anniversary of my father's passing from cancer, so the timing of your series is personally meaningful.

It took me a long time to first talk about my father's illness, he was diagnosed with an advanced and aggressive malignant brain tumor when I was fourteen. It took me even longer to reach back and find memories in my mind from before he became ill. For nearly three years we (my parents, sister and I) coped with the illness in our own ways and prepared for what we rarely spoke about, but knew was coming.

The things that I feared the most during my dad's sickness were naturally my father's death, the well- being of my family in the long run and not losing faith in God. As a Jew, the concept of death is different than what I think most people understand. Death is neither anticipated nor seen as going to a better place. Death is a natural part of life that hurts all it touches, because nothing can prepare you for it, and there was meaningful but relatively small consolation in knowing that my father was no longer in pain. For a few moments my faith was in doubt. I found myself asking God, "Why?" But soon, with the consolations of my parents and rabbi, I knew that was not the right question. The questions I soon found myself asking were "How?" and "What?" How could I help my family? And what could God and others give us to help us in this time? The answer to the former was by just being there for my family more than I had been. The latter was a harder answer to accept, but more significant in the long run. Through prayer and reflection, including asking God for guidance, the healing I asked for was for my father as much as for myself, and it was largely to give us all the strength to go on. It is a strength that I still carry with me today and when I think about what were the results of my father's sickness and death, this was the greatest gift he gave his then teenaged son.

Now, as I am 26 and preparing to get married, I still find it hard to sometimes share stories of my father with my fiancee. There are still painful memories, but more and more, I am able to remember the times before he was sick and share the happy memories.

Faith has a funny way of giving us help, even when it may not provide exactly what we may want or think we need at the time.

Sent by Jonathan Strausberg | 11:50 AM | 7-24-2006

Dear Leroy, I listened to your story on the radio this morning. Having Cancer is so hard and those with it have so much courage. The same treatments year after year, chemo to kill the bad and the good cells and to devastate the body. I just recently learned of a fruit juice drink introduced to this country about three years ago that seems to be helping people with cancer. Would you be willing to look at it?? If so, please visit my website...www.Carlita.NaturesWellnessSecret.com.

If you visit, read some of the experiences that people have had. If you do visit, please email me that you were there. If not, thank you for reading this and my prayers are with you.

Carlita

Sent by Carlita Johnson | 11:55 AM | 7-24-2006

Leroy,

I hear you! I've spent a good chunk of my adult life fighting cancer (Hodgkins disease, lymphoma). I've never gotten good results from my scans. I've had nightmares about it.

Something like: I am sitting in the exam room and hear the doc's footfalls coming down the hall. He stops at the door and pulls my file from that plexiglass tray on the outside. He pauses for an eternity. He enters and greets me, and then says "You know, Steve, that as a rule I never give a diagnosis until all the test results are in - and I don't have them all."

"Of course, doc, I understand."

"Today, I'm making an exception."

"What??"

"Steve, it's big and it's nasty-looking and I thought for a minute - oh, never mind".

"What?"

"No never mind!"

"What?"

"Well I thought I saw the words 'certain death' written across it."

Leroy, it's never been quite that bad but...

I'll be praying for you!

Your fellow warrior,

Steve Dugan

Sent by Steve Dugan | 12:03 PM | 7-24-2006

I heard you this morning on NPR. I had heard your commentary awhile ago but didn't realize that it was a *series*. Thank you for sharing these thoughts. My mother died last August after years of battling a rare form of ovarian cancer. She had been diagnosed, received chemo, suffered the consequences of the treatment - like loss of hearing, neuropathy in her hands and feet - but she was good for five years. Almost. Right before that five year mark, they found it again and put her on what I considered a nasty course of chemo...and they kept changing it...and then they told her she would be on chemo for the rest of her life. I didn't even know they did such things. And her being in Florida and me being in northern Minnesota, it was hard for me to become involved with her treatment and her doctors. I tried but Dad was in full control and prevented me from being involved. After the first round of fighting the cancer, I learned to back off and let them handle it the only way they knew how.

What struck me about your story is that you're sharing it. Mom wouldn't share hers. Part of it was that Dad wouldn't let her. He wouldn't let her talk about it. He was her caregiver for years and he took care of all her needs except one: the need to express her fears and her feelings. He thought...well, I don't know what he thought although I've tried to talk to him about it... but I think he thought if we didn't acknowledge it, that it would go away. Of course it didn't. When they told mom they were taking her off the chemo last March, to me that was an ominous sign indicating The End, as they had said she'd be on chemo until the end. But for some reason it didn't click with Mom and Dad and they just continued on. When the doctors recommended hospice, Mom was angry and defiant. "I'm not going anywhere," she said. I went to Florida in August to help Dad, knowing I'd be there until the end but not knowing the end was only 10 days away. Mom still didn't talk about her fears, maybe it was too late then. I found her calendar where many days a week she'd make the simple comment "bad day." "Bad Day." It still makes me cry to think how many bad days she had, but she didn't/wouldn't/couldn't share those feelings. She didn't tell me what the chemo felt like, although I know she dreaded those weekly sessions (three weeks on, one week off for the last three years of her life). Whenever Dad caught her talking to me about it, he'd change the subject. And he stayed by her side pretty constantly. So reading your posts here makes me remember Mom and what she was going through that she couldn't share. It makes me so sad.

Coming up on the one year anniversary, Dad is handling his grief in the same way. After 54 years of daily companionship with Mom, he's breezing through life now, rarely acknowledging his feelings. I know he's lonely but he puts on a happy face and acts like it will go away if he ignores it. Maybe it will, maybe loneliness and grief isn't as mean and persistent as cancer is.

So thank you for helping me to understand some of what Mom went through. May you have peace and strength.

Sent by Kimberly Ditz | 12:10 PM | 7-24-2006

Keep fighting. It's worth it. I never get raspberry radiology cocktails, always banana or orange. I have survived Non-Hodgkins lymphoma for two years now. Hang in there.

Sent by Char N. | 12:17 PM | 7-24-2006

Good Morning,

I heard your broadcast this morning for the first time; thank you for sharing. Prognosis is a daunting challenge for the medical community. The burden of an illness is highly individualized, as is the response to treatment. While the medical community is expert in diagnoses and treatment there has been little to offer in accurate and objective assessment of prognosis. About twenty years ago I observed a value from an existing test that seemed to hold great power over the patients I saw. It found serious illness, told whether treatment was working and predicted the timing of death. After years of further work I was able to document the discovery, patent the work and now submit it to the FDA. There are numerous publications that demonstrate its effect but few fully understand (yet) the technique or the value of the finding. However, the test is simple, harmless and easily done. By electrically illustrating the cell membrane, a single value calculated from the measurement without assumptions or statistical manipulations illustrates a basic level of physiology and characterizes prognosis. As the study is focused on a stage of physiology that occurs early in the hierarchy, the cell membrane, the data precedes those evidenced by lab studies, imaging techniques and physical signs. This single value can be positive (good), neutral (unchanged) or negative (not good). It can be used as an adjunct by you, your family and your healthcare team to guide and support healthcare decisions. It is this finding that can help guide us through the maze of treatment and much more. The data exists and we are working as hard as we can, and, of course, we could use help. If you would like to learn more I can share information with you and your physicians.

Good Luck!

Cheers!

Michaeal

Sent by Michaeal Singer | 12:19 PM | 7-24-2006

Dear Mr. Sievers,

On my way to work this morning I heard your commentary "An Act of Faith." In January of 2004 I lost my 13 year old son to cancer, after eight years of treatment. Your words brought back moments so vivid that I can't stop thinking about them even though I'm at work..as far away and different from that world as I've been able to get. I remember the games I played with myself during scan weeks. The "no news is good news" game, because they always seem to deliver bad news as fast as possible, whereas good news languishes somewhere in the back of their doctor brains. When you talked about studying the faces and behavior of the technicians, reading meaning into every grimace or smile, I remembered dozens, maybe even hundreds of times that I peered into those impassive faces looking for clues. I finally started sending my husband to scans with my son, he's from the south and could talk the hind leg off a donkey...he always got an early read on scan results. In the end, I asked the oncologist not to call me at home, but to call my then ex-husband with test results, because the very sound of his voice on the phone sends my stomach into my knees. I had a child to take care of, and at 13 he'd become as adept at reading my expressions as I was with the doctor.

And all the rituals, if I kiss my son five times before he falls asleep, everything will be okay if I see three black birds out the bathroom window, everything will be okay. In a support group for parents of children with cancer I learned that this type of ritual bargaining is pretty common. As parents, we are trying to control something, trying convince ourselves that everything will be fine so that we can face our children and tell them with a parent's assurance that they will be fine. But there really isn't any control, and five kisses might not work (should I have tried ten or three?) and the birds hardly ever cooperate.

So, I really, really hope your scans results are good. I'll send good thoughts...and three black birds your way.

Sent by Jody Handerson | 12:23 PM | 7-24-2006

Good commentary today (7/24). What I learned from this process (8 years): when the doctor sits down, you're screwed. They fly in with good news and keep standing. Bad news, they pull up a chair.

Sent by Michael Gorodezky | 12:26 PM | 7-24-2006

...and my scan is next month. Even if the results are favorable, you are always wondering if they read them correctly - did they make a mistake? In the back of your mind you're concerned that the scan, after this one, will be the fatal blow. There is never any turning back now. The countdown has begun.

Without exception, for years, I kept a journal - just notes on "How, What and Where" my day had been. Finding it refreshing to look back on what experiences happened to me five years ago. It would recall the feeling of that event - mostly "contentment." However, after last year's diagnosis of lymphoma, I can't reminisce (I don't want to). I will not keep a log of my day's events. HOW many more scans? Contemplating WHAT is ahead of me? WHERE will this journey take me? We know where - it's just WHEN. . . .

Sent by Carol A. Teegarden | 12:28 PM | 7-24-2006

Dear Leroy,

Time for me not to be the silent beneficiary of your generous blog any longer. I feel far less alone now, reading your postings, avidly, every morning. There are indeed lots of us out here, on a cancer journey of one kind or another. In my case, I don't have cancer, at least I don't think I do. But my closest, dearest, oldest, most treasured friend does. And things don't look good. So having you in our lives (and I just referred another friend to you as well, who now routinely says "As Leroy says..." as if you were a close friend) has made an extraordinary difference. I'm not sure why really, but I think it's your honesty and generosity (there's that word again, but I think that's the heart and the spirit of your postings) and your compassion for all of us living here in our parallel realities, trying to make some sense of it all. Thank you so much for this gift. I'll be thinking of you next week with hope.

Warm regards,

Ellen

Sent by Ellen Kwatnoski | 12:31 PM | 7-24-2006

I have stage IV breast cancer. I may also have cervical cancer from the drug D.E.S. that my mother took to prevent miscarriages. In June 2006 I decided that I no longer wished to be a victim of the assembly line oncology that was the norm in W.N.Y. I asked my primary care doctor to connect me with Hospice. I am now having weekly visits from a Hospice nurse who is helping me to manage the pain. I remember where I came from before I was born and I have friends waiting for me on the other side. My beliefs in reincarnation still make it hard for my family and friends to understand my choice to die if I can no longer handle the pain. In some ways having cancer for me is worse than having a baby. I knew that pregnancy only lasted 9 months at the most. The waiting is the hardest part. I have catalogued my art for my husband so he can take full advantage of the dead artist game. You know the part where I have only earned sixty dollars this year, but when I croak, my art will be worth more? I have fantasies of my husband being able to retire on the money that my art will bring. The legacy of not being afraid to die and my calm demeanor does seem to make my people feel better.

Sent by Kathryn Leslie Bennett | 12:33 PM | 7-24-2006

I listened this morning as you spoke about not getting information, and attempts to decipher "clues." Yes, "...the doctor knows..." but you have an advantage over his coyness - You have a right to know what is going on. Furthermore, that right includes demanding that the doctor tell you in language you understand.

I used to be an RN, used to work in an oncology ICU unit. You have the right to know what is going on with your body. You have the right to be told in language that makes sense to you. Too many MDs (especially specialists) seem to play god with information, demanding you be placid and just do what they say.

I no longer am an RN, but I remain a patient advocate and remain totally opposed to the "...beg or grovel..." that the AMA seems to demand.

I can only encourage you to stand up and demand your right to know & understand what is going on. Make the MD explain the "machine" results - from the first time to this upcoming one. In every hospital, there are Patient Advocates (and in some areas, there are Nurse Advocates who can be with you and the doctor to help expain what is going on).

Just don't let any tin-plated god wannabe run your life. You're a journalist - pursue the truth/story of your cancer just as you would at the old Jennings Nightline.

Good luck & blessings

(Oh, it may sound trite - but there is what I used to call the positive side of cancer: you receive the message of mortality and each breath becomes precious with each moment to be treasured. The rest of us still live as mortals.)

Sent by F. A. Carroll | 12:38 PM | 7-24-2006

I died with chemo —- and lived with alternative medicine. Now, I only practice alternative/complementary medicine. From the little bit you divulged in your commentary, you sound like the perfect patient for that. I'd be happy to help or direct you elsewhere. Cheers.

Sent by H. Bahr, M.D. | 12:50 PM | 7-24-2006

My husband is battling kidney cancer and this commentary I heard on NPR this morning really resonates with me. Cancer and the harsh treatments patients must endure engulf the cancer victims and his/her family and friends. Until you have to live through it, you can't hardly imagine how it is. I know I never thought about it until it struck our family. I'll be much more compassionate toward others with cancer after having experienced this.

Sent by Leigh Cox | 12:53 PM | 7-24-2006

A friend heard your discussion on the radio this morning and told me to check out the website. How appropriate. . . I have the "tests" tomorrow - CT scans, x-ray. I won't get results until Thursday when I see my doctor. I have my 5th treatment scheduled on Thursday and the results will determine whether I need 6 treatments or 8 treatments.

I have follicular lymphoma, Stage IV-B, because the bone marrow is involved. I remember waking during the night and, at first, the diagnosis was not in my conscious memory and then it would come flooding back. "I have cancer." It was like I had to remind myself, because I didn't feel any different. That was before the chemo took all my long hair and I had that awful taste in my mouth and I couldn't sleep. Thankfully, I haven't suffered very much from nausea, just fatigue.

I, too, hear of others undergoing much more horrendous treatment and feel so unworthy when people think I'm so strong to be able to keep working and living as normal a life as I can.

I remember the day I told my husband I was going through a grieving process. Grieving because I knew that life as I had known it would never be the same, grieving that I had to go through the treatment process and fear of the unknown, what the future would hold.

At 53, with two grown children and looking forward to travel, grandchildren and retirement, I suddenly came face to face with the dreaded diagnosis. And then I was reminded of my faith, faith that God had been with me before the diagnosis and would walk with me through the process and would be with me after.

Sent by Stephanie Bernard | 12:54 PM | 7-24-2006

While your discussion of your ordeal with chemo and typical western medicines "treatment" is honorable, I wonder what else you have done? In my business, I meet 1-3 cancer patients each year and none of them do anything but jump into the regimen of chemo, radiation and surgery, and hope for the best. As a newsman isn't it your life's work not only to report what you see around you but to actively seek out the news? What have you changed in your life? What alternative treatments have you tried and to what effect? What are you willing to do so that your body will dissipate the cancer? Most people don't realize that we routinely have cancer cells in our bodies and that a healthy body eliminates the cancer on its own. I encourage you to seek out the other options available. If I or anyone I can influence ever gets cancer the first thing I would do is head to the Optimum Health Institute for a couple of weeks. There are also therapies in Europe that have proven track records. I hope that the next dispatch I hear from you is about how you investigated some of these therapies, utilized them and then went to your next scan with joy as you knew it would show that the cancer was removed by your own body. Get well and spread the good word.

Sent by Eric Taylor | 12:59 PM | 7-24-2006

As I struggle with all the same issues, chemo days, scan appointments, blood tests and finally results from each one, I have to tell myself that if I only have days, months or years left, then why waste them on depression? It take a tremendous amount of energy to get past the ultimate death sentence and live life to its fullest. So we have a choice in the morning when we wake up. We can be negative and depressed or we can be positive and enjoy the day. Ultimately I know I will die from metastatic melanoma but I don't know when. So I try with all my might to make the most of each day for my sake, my children's sake and my wife's sake. It would be a bigger tragedy if I wasted the few remaining days, weeks or years of my life. There will be the days when I allow myself to be down (emotionally), but I need to quickly snap out lest I ruin what's left of my life.

Sent by Lee Collier | 1:02 PM | 7-24-2006

Good luck on the tests next week. We will be thinking about you. I replied to your email but haven't heard back...just wanted to make sure you received it. (I know it is selfish of me to think you would reply to each email, I am sure you get hundreds... I just wanted to make sure you knew how much a past intern appreciated your humor and wisdom).

Thanks!

Jennifer Ellett Fall 03 Intern

Sent by Jennifer Ellett | 1:05 PM | 7-24-2006

Thanks for today's blog. I heard it on the radio this morning, and reread it when I got to my office. I am a 4 year survivor of stage 1 breast cancer, but just had my first PET CT scan last week, and had the 2 day wait to find out it's all clear. But the waiting is always brutal. As much as we would love to get back to "normal" life, "normal" has been forever redefined. Hang in there!

Sent by Annette Crump | 1:06 PM | 7-24-2006

Leroy,

Listening to your commentary reminded me how I felt when I was diagnosed with Stage 4 cancer. They went into the operation expecting Grade 1, but it turned out it had spread. I remember the doctor looking at me afterwards and apologizing for it. He said the sample biopsy was not indicative of the situation. I remember when the oncologist came and told me that the news had been confirmed. I cried a little, and the nurse sat with me and hugged me. Then after I got home, everything seemed to move quickly. Four weeks after surgery I was getting my chemo cocktail. I didn't have time to be afraid, and my attitude became "well, it's spilt milk... can't change it, let's clean it up." I had great support, especially from my family and friends. I didn't realize how much until after my treatments were over.

Today I try not to think of the cancer too much, but the ghost rears its head on a quarterly basis. I see the oncologist every three months and go through a myriad of tests, although the drink I have to sip tastes like a bad pina colada!

I have learned through my experience with cancer that you have strength you never knew existed until you have to confront this pernicious adversary. I never did the imagery or the exercises that the nurses suggest. As I lay in bed with my muscles and bones in excruciating pain while fighting tremendous nausea, I didn't know if it would subside. I just kept thinking to myself, this is a bad migraine and it will be over soon. I suppose that was my mantra at the time and I didn't even realize it was a goal.

I still go to the chemo clinic every 4-6 weeks to get my port flushed. It's enabled me to keep in touch with the nurses that gave me such good care. As one said, "It's so nice to see a smiling face. Most people never come back and we never know how happy they are."

I know that you have received much advice in your journey with cancer. I'm not sure that I could give you any great pearls of wisdom. I just fought it my way. Each of us has to find our way, which ultimately will be a lonely way. It is a mountain each of us with cancer must climb, and when you stand on the peak after it's over, the view is breathtaking.

Thank you for sharing your thoughts and fears and hopes with us. I'll be thinking of you.

Sent by Martha Schoolfield | 1:11 PM | 7-24-2006

A year and a half ago, I went through chemo under the assumption, based on research available at the time, that it increased the odds of my survival by 12% (of course, these statistics are based on the biology of other people, so who knows what the true percent was for me). It was grueling, and because it made me very sick, I lost a great deal of weight (which was NOT a goal at the time!). I had both good and bad days, but always felt somewhat debilitated. About a month ago, new research showed that the chemo I underwent really only would increase my odds of survival by 2-4%. Hmmmm. So now I wonder: would I have gone through that experience and potential risks (like developing new chemo-caused cancers) for those odds? I'm not so sure. We do what we think is the right thing and what our doctors understand to be the best thing, but it really is a gamble, and we're just doing what we can to increase our odds. There's no looking back, though.

The waiting for test results is awful. Our imaginations are powerful. My oncologist was always so wonderful about calling me on a Friday night with results so that I wouldn't have to wait and worry all weekend (he works the most incredibly long hours). But it's hard to think about going through that experience for years to come. I guess the testing and the waiting are in my future, though, since we cancer patients are so closely monitored.

It sounds like you're due for some good news, so I'll put positive thoughts out there for you.

P.S. I found the lemon flavor to be the least stomach-turning.

Sent by Maggie | 3:22 PM | 7-24-2006

You didn't say what scans you've been getting. It sounds like they are CT scans. Tumors take a long time to show a response to treatment by anatomic imaging such as CT scans. But metabolic imaging with PET scans (nowadays often combined with a simultaneous CT scan) and similar nuclear scans show changes much earlier in most forms of cancer (you did not say what kind of cancer you had), so that you and your doctor can find out much sooner, allowing treatment to be adjusted much sooner. Talk to your oncologist about these scans. Best wishes.

Sent by Cal Lutrin | 3:24 PM | 7-24-2006

I listened to your comentary "Waiting For Test Results" on my way to work this morning. I am lucky to live on the coast of Maine and my path to work winds through forests and along the ocean. I am also two and half years past chemo and radiation treatment for breast cancer. I have found that the waiting never ends. Every appointment, every test, every odd pain starts the clock over again. Since the medical statistics are based on 5 year segments, cancer survivors begin to live their lives in 5 year increments. I find myself trying to cram in as much as possible "before the deadline." How much can I experience in this 5 year block just in case the next one does not pan out?

To some degree it is rather liberating. It is easier to be frivolous and daring because you can always fall back on the "I may only have 5 years."

My hopes and prayers are with you, I ask only for yours in return.

Sent by Jan Cox | 3:36 PM | 7-24-2006

On Saturday, I went with a friend to a barber and had my head shaved. It was two and half weeks since my first chemo. My doctor said my hair would fall out in three weeks, just in time for my next chemo. It started to fall out on Thursday, shedding really. I would reach up and touch my hair and a bunch would come off, just like Brussels, our cat. I hated the feeling. For whatever reason I decided to be proactive. Now I'm a little sorry. Maybe I should have gone for a buzz cut. At the time, I followed the advice of the barber. I remember sitting there in the chair looking in the mirror and feeling like a prisoner being shaved. I thought of the holocaust. The ultimate indignity, loss of hair, loss of sexuality.

I look like Yoda. My friend Angela said I looked like a wise person. I don't feel wise only unexpected pain. Little porcupine-like prickles, lying on a pillow, I experience needle like jabs. What about all those shaved women? Did they feel prickles? Did they cry over their lost hair, or had they lost so much by then it didn't matter? Everyday, I remember how lucky I am. No one is bombing me. But today I feel sad and a little weepy. I loved my hair. When people say it will grow back, I just get angry. I want to say, "does that mean you want to shave your head in solidarity?" The thought that it will grow back is of absolutely no comfort to me. I still have to experience the moment of baldness.

Sent by Marita Downes | 4:01 PM | 7-24-2006

If it's the contrast for the CT scan you mentioned today, put it in instant lemonade mix — you can't taste anything but the lemonade.

Sent by Sue | 6:28 PM | 7-24-2006

I heard your story on NPR and feel for you and your tough fight with cancer, but listening I was pained and had to ask why would anyone willingly subject themselves to being pumped full of poisionous, dangerous, toxic drugs, addministered by drug company henchmen called "medical doctors"? Do you realize that there is absolutely zero evidence that chemotherapy has any effect at all on cancer? No joke, ask your doctor! Do you know chemo kills thousands of people yearly?

Our former first lady Jacquline Onassis went in for chemotherapy treatments, walked in, mind you, (not on a stretcher or wheelchair or anything) and 3 days later she was dead! Do you know that there are actual real natural cures for cancer but the incredibly powerful and corrupt AMA and FDA have suppressed them, jailed and even killed doctors who try to tell the public about these cures? They have also made it illegal for anyone to claim that they can cure cancer! We have been the victims of a massive brain washing campaign in this country by the AMA and the FDA to convince us that cancer is this horible incurable disease, when in fact, all it is, is a toxic build up in our bodies and a depletion of our vital enzymes and minerals brought on by our poor standard American diets (SAD diets) and also our polluted enviroment. It's our bodies' way of saying "enough already, I need a little break here for awhile." U.S. doctors are of the school of hacking out the symptoms first and not dealing with what caused the problem in the first place, which was an inability of the body at some point to effectively deal with all the toxins entering through traditional means, quickly enough, so the body in its infinite wisdom creates a protective place to store the toxins (in a tumor or other growth) until some point in the future, when it's not so overly toxic and is more able to deal with it. So simple that it's unbelievable really, that with all the "great" minds of the medical field none of them know this. Or do they and just don't want us to know this? How does a high school graduate in Southern California know this? Nature is so simple and efficient; nothing exists in it that is not absolutely necessary and this includes "cancer." By not addressing the cause, the growth will very likely grow back, or manifest in some other form and then the medical community will name it something else, but still won't deal with the root toxicity problem! If by some miracle or grace of God, you do survive those deadly drugs they're giving you, your disease will probably return and they'll say something like "Good news, you beat cancer, but now you have kidney failure" or something else, still caused by the toxicity that they refuse to address!

Do you notice that you never even hear of occurences of cancer (or A.I.D.S.) until about the mid to late 50s? (coincidently just about the same time the goverment told us that our nation's farm soil was now completely devoid of natural organic minerals!) Now it's all you hear & it's like the #2 cause of death in this country running right up there with accidental deaths caused by doctors themselves! The ones that they admit to anyway! In 1900 America was the #1 healthiest country in the world (of 100 countries paticipating in this study), by the 30s we were already on the decline, in the mid-40s we made it back up to #2, presumably because many families grew and lived off of organic victory gardens and the meat supply in this country was very low and very hard to come by and I also think it had a lot to do with the fact that many doctors were over in the war so people didn't go to them as much! Currently we are "dead" last! Yes #100 of 100! The most unhealthy country on the planet, with supposedly the best medical system! Does something seem off here? Yes, there is something and it's called there is big money in cancer and in people being sick with it!

I could ramble on &and on, but in the hopes you may read this email I have to stop myself. There are many good books on the subject of natural cancer cures also, with cure rates far exceeding anything the AMA can claim! They haven't yet been able to stiffle all the good doctors (although in my state of California they have made it illegal for any doctor to claim he can treat cancer in any way other than that prescribed by the AMA)!

Best wishes to you and family.

Concerned in California,

Tony

P.S. The names of some books that I have found helpful in my fight with testicular cancer. They are:

1. The Breuss Cancer Cure, by Rudolph Breuss

2. Confessions of a Medical Heretic, by Robert Mendelsohn M.D.

3. Rational Fasting, by Arnold Ehret

Again best wishes and good luck!

Sent by Tony | 6:31 PM | 7-24-2006

Hi, Leroy. Although I don't have cancer, I understand the turmoil of waiting for lab results, over and over, every 3 months, for the rest of my life, as I have HIV. Every 3 months, it's a gamble. Are my meds still working? (I had to stop them a year ago, because my liver enlarged, was painful and I was having to take pain pills just to sleep. So now, it's just a matter of "when" I go back on them. Not if.) Am I now full blown AIDS? In fact, my bloodwork was drawn this morning, and I will wait, for weeks, not days, but weeks, for these results. Unlike many patients, HIV patients tend to learn the meaning of their lab values. I can't explain this. Add to that I've been a RN for 24 years, and I know the meaning of what I see even before the doctor speaks.

I fully understand, many of us out here do, even if we don't have cancer.

To that end, you are far from alone.

Sent by Robert | 6:46 PM | 7-24-2006

Hang in there, Leroy. My brother-in-law has been battling lymphoma for 5 years and just found out he is PET-negative. After 28 positive scans, finally, it turned around. You are very kind to share your story. It has touched many, including me. Best wishes.

Sent by Rich Button | 6:48 PM | 7-24-2006

Leroy, I sincerely wish you the best. It's been a little over five years since God has blessed me into "remission", whatever that means. I feel every day that I wake up I am so fortunate to be on this earth alive because any of us that has gone through what you are experiencing all know how tenuous the very thought of life becomes. Hang in there!

Sent by Pam | 9:36 AM | 7-25-2006

I was heading south on the I-5 corridor between Portland and Eugene listening to your commentary about cancer when your name was mentioned. There is only one Leroy Sievers, I thought— we went to high school together. So I'm just writing to tell you that my thoughts are with you. The series is very moving and yes, we all have friends or family members who have gone through this extremely difficult and painful process. I hope for the best surviving cancer and thank you for sharing it with the rest of us.

Sent by Cynthia Pfeiffer | 9:48 AM | 7-25-2006

Your commentary on NPR really hit home today. I have a CT scan tomorrow which I have been anxious, as usual about. I was diagnosed with stage III ovarian cancer 18 months ago and it has been a roller coaster since then. I initially responded well to the chemo and after six treatments of two drugs, I did a maintenance which lasted twelve months with treatments once a month of one of the drugs. My tumor marker, which is pretty specific for ovarian cancer, was gradually creeping up for several months but while it stayed in the normal range, I was developing new tumors throughout my abdominal cavity. Even though I was suspicious as the marker was rising, my doctor kept assuring me everything was fine. Then I had the checkup CT which showed the new tumor growth. My specialist doctor was surprised at how well I took the bad news, but I know something was wrong.

Now I am on a new chemo which, by exam and tumor marker I seem to be slowly responding to. But of course the scan will be the true test. I will not get the results of this one so quickly, so will likely have to wait a few days.

Anyway, just hearing you speak of the fear of results was helpful to me and inspired me to let you know.

Best of luck to you and know there is at least one person out there (and likely thousands) who understands where you are coming from.

Sent by Andi Daschbach | 9:51 AM | 7-25-2006

I would like to take a moment to commend you on your stories and blog related to your experiences with cancer. I first heard your stories on the air some months ago, and they really impacted me as I endure the watch-and-wait period of a cancer diagnosis.

I am 30 years old, and my wife and I were wed last May. The Monday after we returned home from our honeymoon in Hawaii, we were sitting in the MD Anderson Cancer Center waiting to visit a doctor. I remember thinking that this was all a formality - getting scanned, meeting with this team of nurses and medical professionals - and that we were going to be OK.

Then the doctor came in the room, and told us that he was transferring us to the Lymphoma department. He saw some images on our scan that "looked" like it could be a blood disease. Then came the words that shook me to the core...my wife looked at the doctor and said "but it could be benign, right?" I will never forget the look on the doctor's face that morning. He gave us a befuddled look and then said "my friend, it is possible but highly unlikely."

My wife was healthy, young and a graduate student at the University of Texas at Austin when she was diagnosed with Stage II Non-Hodgkin's Lymphoma. All throughout the experience, she was ready to fight the illness, and did so with such magnificent tenacity - I was astounded. I asked myself if I would be as resilient as she, if I were to wear the other shoe. To my dismay, I often found myself disappointed in my resolve to the question. But six rounds of chemotherapy, 13 frozen/fully developed embryos and one year later, my wife is healthy, and a graduate of the University of Texas at Austin. Her dream has always been to become a school counselor, and she is living her dream ? school started yesterday. In another five or six months, we can try to have children the old fashioned way ? or ? the new scientific way through in-vitro fertilization (hence the frozen kiddos), and this is very exciting to us. What is even more amazing is that one year from now, my wife will be "officially" cured, and we will close the book on this experience. However, neither one of us will ever look at life in the same way. In many respects, a cancer diagnosis brought us together in ways unimaginable. We had to learn how to be a great team, and not let the petty and mundane stand in our way. I don't advocate for any individual or couple to endure a cancer battle, but the silver lining exists in every aspect of life ? even cancer.

I write this entry to your blog to share my story, my pain, my understanding and to let you know that your heroic efforts to share your information are truly an unbelievable undertaking. I imagine it must be somewhat therapeutic to share this information. When we were going through NHL diagnosis, we started a non-profit dedicated to providing financial assistance and support to young adults having to undergo fertility preservation as a result of being diagnosed with cancer. Starting this organization helped me to focus my energy, and this gave me a larger perspective on the cancer world. Now, when we talk with young adults who have been led to us, we understand their emotions, and can better serve our neighbors in central Texas. If you would like, visit us at www.caporalassistance.org, and say hello. I hope you find yourself well in the next few months, out of the infusion center, and into the light once again.

Much love to you and your family during this chaotic time of your life.

Good luck to you, and thanks again!!

Sent by Tony Caporal | 10:56 AM | 7-25-2006

I was moved by your courageous and open commentary on your cancer treatment. I can understand why you're consumed with your test results, as your livelihood depends on it! I believe you can overcome your cancer!

Please, please consider reshaping your thoughts, though. You are not your cancer (your symptoms), and focusing on that reality and all of its negatives can do you a great disservice. Please grab a copy of "As a Man Thinketh" by James Allen, and begin a journey that will promote greater healing. I'm not telling you to stop your conventional methods— just employ a clear vision of what you want and sustain it without fail. Dont even entertain the negative what-if's/possiblities in your mind!

May you live a long and happy life!

Sent by Kay Chambers | 11:00 AM | 7-25-2006

I was diagnosed with breast cancer March of 2000. Learning from the get-go that it had metastasized to my liver was like getting knocked out of the ring in the first round by God himself with a killer punch that was more painful and sadder than anything I'd ever expeienced.

This same circumstance was over the next years however a cause of luminous joy when I lived, and lived, and lived.

Discovering when first diagnosed that cancer had traveled all the way down the road to my liver, my husband and I assumed I'd be dead in 6 months at the most. My husband had said then: "There aren't enough tears in the world to express how I feel."

Chemotherapy did not make me sick. It did get rid of the spots in my liver and I was overjoyed. After 6 months of chemicals I felt like my old self... but wary. I didn't totally trust the peace and sure enough in a year I was doing chemo for the second time. Except for some neuropathy in my feet and hands I had no side effects from chemo again! I did chemo Fridays then went back to work Monday. I pretended I was going to the beauty parlor and one time one of the wonderful nurses actually did my nails! I sat and ordered coffee and Haddock A La Ruthie, named after, of course, one of the cafeteria ladies!

I felt, when people said how well I looked and commented on my good spirits, that this was all a personal achievement: I swelled with pride. By the same token it's so easy to let your ego take a nosedive when you are not doing so well, as if it's your fault, as if you could engineer your response.

I had a glorious three year remission after the second round of chemo. During this time I neglected to think about cancer for long stretches between monthly tumor marker tests and tri-monthly CT scans. I didn't think about cancer and I was a normal person but with an extra jolt of joy! I was alive, alive, alive!!

When people I newly met found out I had cancer they gave me a sad face: "cancer, I'm sooo sorry." But from the beginning when I began in 2000 with the worst case scenario, all had been uphill. Did chemo, got rid of it, kept on with my work, no side effects from chemo, success, success, success. I was so damned lucky.

A year ago with rising tumor markers we did a CT scan that showed a tiny "bit of cancer" coming back. Nothing you'd do chemo for. Very slowly the markers rose and the next scan in 6 months (why did we wait so long to do another CT scan?) showed 4 spots on my liver!! Really scary because the mets had always been few and small, one of these was almost an inch long.

I went into chemo this time as I did the first and second time: I wholeheartedly expected success again because that was cancer "as I knew it." But - wow - this chemo was different. It made me feel pretty crappy. My stomach hurt all the time. I had severe acid stomach and couldn't bend over at all without the feeling that hot melted rusty nails were pouring down into my mouth. I was tired.

I continued to go to work. My usual cheeriness was not always there for me. I felt depressed at times. But, based on my past with cancer, I always expected success.

When my first CT scan after 3 months of chemical soups did not show any significant change in the size and number of spots I was blown away. WHAT? I had never had to absorb information like that and I am still trying to process it. I was the Golden Girl of cancer with highly successful responses to both chemo regimens. Who was trying to pull the wool over my eyes?

I searched for answers, and searched. Perhaps it was true that too many antioxidants taken during chemotherapy like Selenium and Vit E and Co-Q-10 kept the chemo from doing what it was supposed to be doing. Maybe the soy products need to be deleted from my diet.

I had a sinister thought about those worthy tumor markers I'd always followed and loved to hear about: perhaps they meant nothing. They had led me down a rosy path of comfort because with this chemo #3 they had gone way way down, almost to normal. But hey! The cancer still dwelled within, big as life, big as before treatment.

I shared my worries with my doctor at our last visit and he listened for 3-4 minutes and then said "You have alot of thoughts." What? What was he saying to me? I gave him a slight smile and said: "Yeah......I have cancer." (meaning "of course I do, you boob...")

He said "I just wish you could see the positive things here...your marker numbers are low, the spots in your liver have not grown at all," etc.

I wanted him to see this from my perspective of past great successes......it's all I ever experienced before so this is very hard for me to feel positive about. Am I expecting too much of him?

I will have another CT scan soon. It's been almost 6 months since I began chemo and that last scan was at the 3-month mark. It will, I think, show the spots have decreased much more. But I want them gone, and I want to go into remission again AND I want to feel good again. Is that asking too much?

Sent by Nancy Oliveri | 11:03 AM | 7-25-2006

Dear Leroy,

I was moved by your courageous and open commentary on your cancer treatment. I can understand why you're consumed with your test results, as your livelihood depends on it! I believe you can overcome your cancer!

Please, please consider reshaping your thoughts, though. You are not your cancer (your symptoms), and focusing on that reality and all of its negatives can do you a great disservice. Please grab a copy of "As a Man Thinketh" by James Allen, and begin a journey that will promote greater healing. I'm not telling you to stop your conventional methods — just employ a clear vision of what you want and sustain it without fail. Don't even entertain the negative what-ifs/possibilities in your mind!

May you live a long and happy life!

: ) Kay

Sent by Kay Chambers | 11:15 AM | 7-25-2006

I heard the commentary "Waiting for Test Results" yesterday on my way to work and could relate to the whole process. Having lived with this disease for almost 8 years, and 6 of them with known metastaces, I have gone through the whole neurotic episodes of waiting for results and trying to read the technicians' faces. Finally I realized that I was taking every one of their actions personally and I have finally been able to stop looking for signs. But hey, after all these years, I'm grateful to have had a lot of practice. I remember one scan where the technician was chatty in the beginning and then pensive at the end. On that day I knew that the technician was just so sad to see this patient whose cancer had spread so much that I was soon to die. Days later I learned that everything was stable and there were no changes in my scan. So then I decided that the technician had not known that I was aware that the cancer was in 6 different places in my body and he was feeling sorry for my situation. But who knows maybe he was simply getting behind in his day and anxious to get to the next patient. I don't try and read the technicians anymore and I don't bug my doctor for immediate results. I wait until she calls me or I go in for an appointment. I have decided if it's bad news they will call me. They know where I am...and I'm the neurotic one who looks fine on the outside, but lives in grateful limbo, waiting for the other shoe to drop.

Sent by Jennie Thackeray | 11:17 AM | 7-25-2006

Thanks for sharing your thoughts and feelings so freely — I've been hearing you on Morning Edition, and really identified with yesterday's comment about waiting for test results. I'm currently undergoing chemo for ovarian cancer, first diagnosed in 1986 and recurrent in 1990 and again this spring. Sixteen years of "freedom," for which I am grateful, but am so resentful of this recurrence I could scream. Friends and family have been wonderful, but I can't express all this anger to them.. I'm so tired of explaining how I feel today as compared to yesterday, and how well the treatment went this time, and how long it takes for the pre-med fog to lift. Most of all, I think I am sick of hearing "You just look wonderful!" If I do, it's because I have taken time and trouble to face the stranger in the mirror, add color and features that aren't there anymore and don the "cute wig" that creeps up my scalp and makes me sweat. I want to rip off the wig and wipe the make-up off my eyes and cheeks and scream, "just wonderful, huh? Well, this is how it really is. This is how I feel!"

Luckily for me, the poison is working, according to the tumor marker, so I'm to have 2 more treatments and then the dreaded scan, to see what, if anythingk is next.

Thanks for "listening," and keep writing!!

Sent by Elaine Payne | 12:54 PM | 7-25-2006

Thank you Leroy for your honesty.

I have a dear friend who is going through her third round of chemotherapy. It is a metastisized cancer...starting with the breast, now in her lungs, lymph nodes and liver. She is my age...a young 41. Her cancer is becoming quite aggressive, and we are all becoming quite scared. Of course, she is doing "great" each time I ask her. I love her to death and am amazed and inspired by her attitude. She is afraid of talking about it too much in fear it will be a "downer" to those around her. I tell her, "nonsense!" But she continues with an upbeat attitude; all the while, I know there is more going on deep inside her. The emotions...anger, hopefulness, fear.

Your article allows me to peek into her life and understand more about what is really going on. I appreciate your candidness. I am a better friend to her because of your willingness to open the door into your life. Thank you for taking the courage and time to do this. It has been tremendous help to me in dealing with this awful, unpredictable disease.

I am sorry you have been dealt this hand, and my prayers are with you and your family. Never give up!

Susanna

Sent by Susanna Najafdari | 12:58 PM | 7-25-2006

Mr. Sievers, I listened to you yesterday for the first time — don't know how I missed you before, but, there it is. After hearing your commentary, I felt I should at least make this small effort to help you, who could, in turn, through your forum, help so many others.

I represent a Ph.D. biophysist who founded and is the head of a small clinic, presently located in the mountains of North Carolina. For the past 25 years, virtually all of his work has been been searching for causes and cures for degenerative diseases.

Along the way, he has achieved singular victories. He both believes and claims that he can eradicate breast cancer. He has also been remarkably successful with bone cancers, some brain tumors and even pancreatic cancer.

His methods use no invasive surgery, save the work, where appropriate, of associated dental surgeons. He uses neither chemicals nor radiation. Simply put (perhaps, simplistically), he makes it possible for the body to heal itself, and, for those fighting the battles, to do it without debilitation, regaining full vigor.

He will take patients only through referrals. If you are interested in looking into his work and evaluating his methods, please reply to me and I will refer you. He will talk to the press.

If you, like so many others, are afraid to take a look at his programs for healing, God bless you and strengthen you along your chosen path. It is an unnecessarily hard one.

All my best wishes.

Q.D. O'Brien

Sent by Quinn O'Brien | 1:01 PM | 7-25-2006

Leroy,

I heard your commentary on the way to work yesterday and can only imagine what you and other cancer patients face daily. My father died of cancer many years ago and I am passionate about helping find answers...and that is why I am writing.

A little over a year ago I was introduced to a dietary supplement, a fruit juice, made from the whole fruit of the mangosteen. This fruit is a natural, rich source of antioxidants known as xanthones.

It has had a positive effect on my health and on the health of thousands of others, among them many cancer patients. It may be of interest to you and your listeners to hear the testimony of this gentleman whose son has cancer. It is a recorded message with information about the product and the business opportunity, however what is most compelling is this man's story. It only takes about 5 minutes to listen to it. The number is 512-404-1277, option #2.

Other sources of information include www.mangosteenexperiences.com and one may also search mangosteen and xanthones on www.pubmed.com.

God bless,

Peggy S. Allen

Sent by Peggy S. Allen | 2:22 PM | 7-25-2006

Hi Leroy,

I heard your commentary about waiting for tests yesterday as I drove to work, and it reminded me of something another cancer patient said, "The worst thing about cancer is that it robs you of your identity." How true and I wonder how it ever got such a powerful status in our culture.

Whenever I fall prey to self-pity and let cancer take a central role in my life, I try to do something physically difficult, like going for a long, hard bike ride (thanks Lance, sincerely) or watching someone else do something extraordinarily beautiful with their body (thanks NYC Ballet Corps). In either case the disease falls back into the role it deserves, which may or may not be deadly, but not the most important thing in life.

Sent by Dave Parker | 3:43 PM | 7-25-2006

As of now there are 63 comments on here just this one day from survivors and friends of those who are gone. It makes me really comprehend how many people out there are dealing with this disease, battling everyday and how many out there have lost their closest to it. And these are just the few that found your blog, listened to your words, at the right moment in time on the exact radio station. It's a big world, and it seems in it there are many fighting this fight.

I am proud of each one, including you. Your daily thoughts help those who have been through it, are going through it and those who have lost loved ones from it.

Stay strong, you're keeping others strong by your words.

Sent by Morgen Martin | 5:13 PM | 7-25-2006

I know all about the waiting. I came to call it being on "doctor time." I was diagnosed with stage II ovarian cancer in 2004. I went through surgery, chemo and am doing well thus far, each checkup shows my tumor marker where it should be. I have grown my hair back. But to me the worst part of the whole experience is the loss of control. No more are you in control of your time. Instead, everything revolves around doctors' visits, chemo, blood tests, white counts, on and on. Even if you try to keep some semblance of normalcy, you don't have control.

What I did appreciate is the support I felt from other cancer patients and survivors. When I would go shopping with my scarf on, strangers would come up to me and say "Chemo? I finished treatment for [insert body part here] cancer... hang in there." It's like a vast network of support that you dont even know is out there.

Since my diagnosis and treatment, one of my law partners died from lung cancer, and another partner's wife died after just a ten month battle with glioblastoma. Sometimes I wonder if I started an unfortunate trend. But I realize that such things are a part of life and living the yin and yang of life bringing things into balance.

But hang in there... there are a lot of cancer patients and survivors that feel that we know you, even if we have never met.

Sent by Kitty Jungkind | 9:39 AM | 7-26-2006

I know exactly what you mean about the professionalism of the technologist. I've had enough scans with one technologist that we know a little bit about each other. But it's not an equal relationship— he will always know more about me before I do. I had a scan in December 2003 that revealed two large metastases in my liver. I would need surgery and chemotherapy to live. Normally, I wouldn't get any information from Steve the technologist about what he saw on my scans. A little thing gave him away and filled me with dread. As I was leaving the radiology suite, rather than saying "Have a nice Christmas" or "Have a nice holiday", he said, "Have a nice day".

Sent by Phil Norton | 9:46 AM | 7-26-2006

I am praying that your scan next week gives you some hope. When my husband had cancer, I remember waiting for those scan results, blood results, etc. Those numbers ruled our lives for ten years. As long as we had just a little bit to hang on to, to believe that there was still time, we adapted and accepted the severely handicapped life that he ended up enduring. My heart goes out to you and I will be thinking of you next week. I know all those who read your blog every day will be rooting for you as well.

Sent by Pat Stanley | 9:47 AM | 7-26-2006

Passionate description. The process is unlike anything we have done before, we are truly the patient. We can try to look toward that day when we classify ourselves as a survivor, or as some people are calling themselves, thrivers. But when the active treatment is going on, we seem to fit a mold that is hard to change. It takes a leap of faith in ourselves to make the change from patient to survivor, and, perhaps some help. Lawrence LeShan, PhD, has a neat little book out, "Cancer as a Turning Point," which has helped some folks make the switch to survivor. However, when I was going through the diagnosis, looking at options and then surgery and recovery and then medication in a clinical trial, I was a long way from calling myself a survivor. I didn't feel like I had a great deal of control over anything. My medical team was in charge. Mainly because I let them take that role and define me as a patient. However, in my reading of LeShan, I discovered that we can make our desicion to become a survivor wherever we are motivated to retreive our dreams, of what we wanted to do, or be, or accomplish. The process seems to work for LeShan and for those people who are reading his work and attending "Cancer as a Turning Point" presentations. In our fight with cancer we can all consider our options and if we find the interest in fighting, and living our lives on our terms interesting and challenging, what have we got to lose? So, maybe this is what any of us could do, see how far we can get on a path that leads to what we want to do with the rest of our lives, no matter what else happens. Hey, what are the options?

Sent by Beryl Rullman | 9:49 AM | 7-26-2006

Leroy, you're a man with a great spirit. You need to know that you sparked a small (very small) movement after Hurricane Katrina.

I heard your commentary about delivering meals for the Red Cross, and how the folks on your route got really excited when you brought them sweet rolls. "Sweet rolls," I thought. "We can do better than packaged sweet rolls." As a good Southern woman who works for a good Southern corporation, I rallied the troops of bakers in the office, and we made and delivered some 150 small personal pan pound cakes and 20 full-size cakes to people and feeding sites from Diberville, MS to Pass Christian, and New Orleans. We labeled them "made with real butter and love from your friends in Birmingham."

When we realized magazines weren't being delivered, we assembled 1100 copies of Southern Living, Coastal Living, and Cooking Light (all produced by Southern Progress Corporation) to fill up the van. I would never have believed that in such dire times, people would have gotten such delight from being handed a lifestyle magazine. But they were absolutely thrilled to see something that represented some normalcy.

I tell you all this not to blow my own horn, but to let you know that you were responsible for bringing a little spot of pleasure into quite a lot of lives. In my mind, that's not a small accomplishment.

My very best wishes to you. Thank you for the inspiration.

Sent by Donna Florio | 11:21 AM | 7-26-2006

I had a thyroidectomy plus RAI for thyroid cancer. Two different labs have failed to run the Tg blood test. When I complain to the doctor's office, it doesn't REACT. I am so angry I want to go AWOL and NOT PARTICIPATE in any more followups. I am told 'it's not on chart'. However, I was able to resurrect computer images of orders. I live in an area where my kind of cancer is 'other' even though there are 2 million people here - I am not near one of the centers of expertise. I am frustrated because I have been told that HIPA prevents me from directly getting results from lab - which would be one way of verifying that tests are even being done in my PPO plan.

Sent by Lauren | 5:06 AM | 6-21-2007

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