A Sign That Something Has Gone Wrong

 
“Is there anyone out there who hasn't been touched by this disease in some way? Who doesn't know someone who's fighting his or her own battle with cancer?”
 
 

In this business, it's all about the "eyes." Or "hits." Or ratings, or viewers... and so on. The way we measure how we're doing in journalism is by counting the number of people who watch our work. There are a lot of people who look at the My Cancer blog. And that's good from a business standpoint. But when you stop and think about it, it's actually pretty sad.

When NPR started this blog, we were hoping that we'd get a number of responses, and we have. One of the things that surprised me, though, is that so many of you write in not to comment about anything I've said, but rather, and more importantly, to tell your own stories. That's something we hadn't expected. Every day, so many of you write in to talk about your own cases, or those of loved ones or family members. And I'm thrilled that we can be a place for you to do that.

But there's a truth hidden behind all those responses: Cancer affects so many of us. Too many. Is there anyone out there who hasn't been touched by this disease in some way? Who doesn't know someone who's fighting his or her own battle with cancer? What might be seen as success, as so many hits to the blog, so many responses sent in, is actually evidence of just how pervasive cancer has become. And that saddens me beyond words.

The same thing happens sometimes when I go up to Hopkins. On some days, you get there and the guards say the garage is full. And that's more than just an inconvenience. That means there are so many cancer patients in that day that there's no more room. What could be sadder?

I guess we could find some solace in the knowledge that we're not alone, that so many others are walking the same path. But that's little comfort; in fact, it's no comfort at all. I think this is all a sign that something has gone wrong. Far too many people are facing cancer. Somehow, some way, it has to be stopped. It just has to be.

 

Comments (Send a comment)

Leroy,

I know what you mean. Not only does it seem that I keep hearing about another one, and another one whove just been diagnosed with cancer, but there is other evidence that it's becoming more pervasive.

I go to the University of Pennsylvania Rena Rowan Breast Center for some of my care. Penn has, as far as I know, two whole floors of Penn Tower-a 22 floor former hotel, now medical offices devoted to cancer. Across the street, a huge new building is being constructed — the NEW cancer center.

Cancer, you should excuse the pun, is a growth industry. The reasons given for so many, and so many younger women getting breast cancer are varied, and sometimes contradictory. I keep wondering if all of the ways that weve degraded the ecology of the planet are part of the picture. As I said in the bc chat room the other day, it seems to be a good/bad time to be an oncologist. One would definitely be busy and have a large practice, but I know that that has to take a physical and mental toll on everyone involved in caring for cancer patients in this boom time.

Sent by Nancy K. Clark | 9:45 AM ET | 11-29-2006

Blogging in my eyes is such a great form of therapy — a chance to share thoughts and feelings. Hopefully some day we won't be blogging about cancer. Another survivor once told me that "cancer sucks," but the people you meet do become angels on earth.

Sent by Jane | 9:57 AM ET | 11-29-2006

When I hear a phrase like war on cancer, war on drugs, war on terror, these things appear to be bottomless money pits. How old is the phrase 'war on cancer now anyway — at least 25 years old?

I sometimes think I've lost my mind but actually I lost my husband to cancer a few months ago. Thank you for your blog, a place where I don't have to move on, something most of my world expects me to do.

Sent by Irene | 9:59 AM ET | 11-29-2006

Something has definitely gone wrong. Amen to that! I posted some time ago that all three siblings, including myself, have been diagnosed with breast cancer. Also, that I went for genetic testing and it came back negative. I seriously doubt its coincidence. So where does that leave us? Environmental is my guess. In the state I live in (and grew up in, more importantly) there are 32 new diagnosis of breast cancer every DAY along with 10 deaths every DAY. That blows my mind. Staggering!

Last night I was talking with a friend who asked about my "normal" friends, meaning the ones that don't have cancer. She was surprised it came out of her mouth and so apologetic. I knew exactly what she was talking about, though, and was not offended in the least. It made me think.... what's normal these days and when will people with cancer out number those without cancer?

Thanks, again, Leroy for hitting on such a poignant topic. It screams ADVOCACY, RESEARCH, EDUCATION and ENVIRONMENTALISTS.

Sent by Carol Eagan | 10:36 AM ET | 11-29-2006

Your post today reminds me of the words my son told me one day. "Mom, I used to think that cancer only happened to old people, now, everyone I talk to either has or had or knows someone that has or had cancer." Those words have rung in my ears since the day he said them. When my son had his second biopsy and he was hospitalized, the oncolgy floor was full, I remember thinking, "Somethings wrong. This is very, very wrong that the cancer floor of a childrens hospital is full."

You're correct, "somehow, some way, it has to be stopped. It just has to be."

Sent by Rhonda | 11:04 AM ET | 11-29-2006

We are all brothers (and sisters) in arms, so sharing our experiences with the only other people who have a hope of understanding is a good thing.

Sent by Brit | 11:06 AM ET | 11-29-2006

Leroy,

13 years ago we moved into an older neighborhood in a small city outside of Houston, Texas (home of MD Anderson Cancer center). It's a great place to live, but we have since discovered it appears to be a cancer "hot spot." Within just my immediate half block there are many cancer survivors: five breast cancers, one lung cancer and two brain tumors (non-malignant, but just as harmful). I researched about so called cancer hot spots and have come to the conclusion that yes cancer alarmingly occurs all over. My response is to make sure I do what I can to take all the prescreen tests like mammograms and now that I'm 50 a colonoscopy. Also to live a healthy life style and hope for the best. I just started to read your blog this month. Thank you for continuing to share your writing talents and making an impact in everyone who reads it.

Sent by Marjorie Snell | 11:14 AM ET | 11-29-2006

Hi Leroy,

My first comment is actually for Irene. My heart just aches for you when I read your comments. You are in a position that so many of us could be in — or already may be in. Thank you for sharing your grief with us, giving voice to it. I think this is an important part of the blog. I don't know you, and when I lost my sister at a young age I really hated when people said this, but I am truly sorry for your loss. I guess the words resonate more with me, now that I'm older.

Leroy, thank you for sharing as well. I don't have a response to how widespread cancer has become. To me, it seems easy to see it as widespread but then, when I was diagnosed with sarcoma, which makes up one percent of all cancers, I realized how many different types of cancers are out there, each one requiring a specific treatment plan different from the next. I required no chemo, only radiation and surgery. (I shouldn't say "only" but I'm selfishly glad I avoided chemo). When I think of my sarcoma, it seems like a vastly different disease from my friend's breast cancers.

On the other hand, what Nancy says is true, there are many younger women getting breast cancer, and I see it firsthand, just in my circle of friends in my little town. Multiply that by all the other little towns in the country... no wonder the parking garages are full.

I'm a stay at home mom with four lovely kids. I don't have any answers. I just don't want them to go through what I've had to go through, ever. Thank you, Leroy, for bringing up these questions.

Sent by Jennifer Haan | 11:23 AM ET | 11-29-2006

I couldn't agree more Leroy. Seems to me, although I am not a doctor, that cancer has become an epidemic. I'd say that every month I hear of someone who has either just been diagnosed, who already has cancer, has just died or someone knows someone who fits into one of these categories.

It is my observation and experience that there is never just one reason why we get ill nor just one reason why we heal. I do believe that environmental influences are one factor.

Sent by Linda Resca | 12:10 PM ET | 11-29-2006

I wonder if it's that we have such advanced technology in detecting cancer early is why we are seeing so much of it now. I think in the old days many people just simply died without knowing what they had or before they could be diagnosed and treated. Now they can detect cancer cells that are just millimeters, thus more people finding out very early. It does seem to be rampant though, I hate to think it's our environment causing so many more cases because that doesn't look to good for my young children if that's the case.

Sent by Sherry | 12:13 PM ET | 11-29-2006

I sent the Web site address to a friend who can use it in place of the conventional support group which may pose a certain amount of inconvenience due to location. Group discussions are very effective in lifting some of the weight brought on by anxiety. Your Web site provides priceless benefit for those who aren't able to physically be in these support group sessions. Great opportunity to extend that helping hand! God bless you!

Sent by Edith S. Pleta | 12:14 PM ET | 11-29-2006

In the early 1960s one of my mother's best friends lost a great deal of weight. My mother asked for her secret and the friend replied, "You don't want to know." It was not until Virginia's death that we learned she had cancer. Cancer was considered rare, even taboo in some circles. In 1976, I was told I needed to have a hysterectomy because they were unsure if the disease I had was a precursor to cancer and did not know how to treat it. I was 26. I began a personal campaign with friends and family and as many strangers as I could about donating to the American Cancer Society.

In 1981 when my best friend died of metastic cancer, I also learned how much of the money donated to cancer research was really needed for administrative costs. I tried focusing my efforts on other areas such as improving the on-going environmental pollution, going to seminars, and trying to provide more education about cancer.

I'm participating in the Sister Study since my sister had breast cancer as well as a first cousin. I'm just a very small piece of a very large effort that sometimes feels were not making any progress. But then I read your story, Leroy, and say, "yes, something good is happening!" I embrace my friend with lymphoma who runs circles around me and think, something must be happening or is that just wishful thinking? I know "progress" is being made in many areas of the cancer research but as you point out, there are just too many people touched by this disease. In the early 1960s cancer did not seem to be so prevalent. What's happened? I guess I think the Web is so interwoven with short-cuts taken to make our life "easier" that we've filled our lives with too many deadly chemicals.

It just makes sense to me: plastic containers for every take out meal and plastic wrapping every item we buy which is then burned in some dump which then emits more chemicals in the air. Polluting our oceans and air so the life giving coral reefs are dying as we greedily cut the air cleansing rain forests. There are no simple answers, I know, but I wish, as I know we all do, that we could find some answers, some solutions, some path we could all walk which would bring us to a place of understanding what has gone wrong!

Sent by Molly | 12:18 PM ET | 11-29-2006

Wow, finally Leroy, you're beginning to see the epidemic. Truly, we are being poisoned to death, our environment, products, our water (chlorine is a carcinogen, and in our water supply), plastics (the coding isn't just recycling, it tells you a lot more).

I found some fantastic sites, like "Skin Deep", where you can look up the carcinogens in 14,000+ personal care products (shampoos, lotions, makeup, etc...) Their degree of safety is color coded. This information was an eye opener. I filled the trash up with "Red" dot products — owned by the EWG.

The EWG (Environmental Working Group) is a fantastic watchdog organization, doing for the consumer, what the FDA would be doing, if it wasn't paid off not too. EWG even rates the amount of pesticides in our veggies and fruit. I now peel my apples. My breast tumor woke me up. My daily produce was dangerous. I now make better choices.

Then there is the Cornell University site, environmental factors that are showing a link to Cancer. The reports are worth reading and pesticides are mentioned.

I also found Breast Cancer Action to be a good website. Truly fighting for BC, not BSing us.

Plastics aren't healthy, and I did some research starting with the American Plastics Council recycling codes, finding out the dangers from the coding, and doing more research.

There is a cancer epidemic, and the "Race For A Cure" propaganda fuels the epidemic, and doesn't teach people real factiods. Personally, that offends me.

"The Cancer Industry" use to a tin hat stuff to me, but now I know better.

Sent by Laura | 1:29 PM ET | 11-29-2006

Leroy,

First, some truth — reading My Cancer has become my obsession.

Next some fact — I work at one of 33 National Comprehensive Centers, trying as best I can to help scientists secure all too scarce funding dollars to support their research. Finally, some opinion — there are far too many facing a problem that while complex, can be solved. But with far less public funding available now than ever before to do basic and clinical research, less and less gets done.

And its this level of inaction that makes me very sad indeed.

Sent by H. Marie | 2:08 PM ET | 11-29-2006

Unfortunately I personally do not know of anyone that has not been affected by cancer in some way. You are absolutely right in that it seems to be a pandemic.

I love reading all of your posts. You always hit the nail right on the head as far as what being in the world of cancer feels like. You are very brave to just tell it like it is and not sugarcoat anything.

Although I have not personally polled anyone outside a store to see if they fall into the category of Not Ever Witnessing First Hand or Second-Hand Cancers Wrath, after reading your last post I just might and report back to you on what I find.

Okay, here is my story: When I was 17 I watched my Aunt Pat die in my bedroom from pancreatic cancer. She went fast. I never even had a clue what she was feeling until I had a cancer scare myself. September 1, this year, I had a 22-centimeter borderline tumor removed from my abdomen. The tumor was cancerous. But since it was completely removed I did not need further chemotherapy. It was only from that experience that I slowed down enough to really think about what happened to my Aunt Pat when I was 17. I guess laying in a hospital bed, and then in your bedroom for days can take your mind to many places.

My mother the same month was diagnosed with lung cancer and is currently going through chemotherapy. I am her caretaker.

The way you describe the chemotherapy room is exactly how I see it, new nurses trying to find a vein, people bonding in such intimate ways out in the open, it feels like you are in another dimension, sometimes like the scariest episode of the Twilight Zone. What I like about the experience is that it makes you slow down and just observe. You are observing and reporting so honestly, subjectively and objectively, even when it is your own very personal struggle of fighting for your life.

If cancer can be cured by just a positive attitude, I would say that you would never leave this earth.

Sent by Lisa | 2:49 PM ET | 11-29-2006

Leroy,

As someone newly diagnosed with cancer this year, and a daily reader of your blog, I have been wondering about the prevalence of cancer also. My question was often "Is it just me, because I now have it, or is it more prevalent?" So, you took the thoughts I was having, and asked the questions I was asking! In my heart of hearts, I do believe that something is fundamentally wrong with the ways we live our lives, and with our exposure to chemicals. Before I was diagnosed with gallbladder cancer, I saw myself living a healthy life, eating well, exercising and having those screening tests that the doctors urge us to have. I don't know what made the tumor grow in my gallbladder, nor do any of us really, but I share your questions and your concerns, for us affected now and for our children. And I thank you from the bottom of my heart for providing this ongoing forum for all of us touched by this disease to share our thoughts, concerns, and questions. Thank you, thank you!

Sent by Lynne Dahlborg | 3:14 PM ET | 11-29-2006

Leroy,

I think another reason you get so many responses from us wanting to tell our stories is that we so don't want to be alone. When I went through cancer treatment 16 years ago, I did not know of any other 21 year old person going through what I was going through (and in fact my cancer was rare and I probably WAS the only one at my age!). I think it is so easy to feel isolated after a diagnosis and treatment begins. This last time around, I used technology to help me connect to friends and family through a blog and e-mails, and joined a colon cancer forum for young people with colon cancer, and have been listening to you on NPR (Just this week found your forum). It is such a relief to know we are not alone.

I think cancer rates are rising. Amazing — we know better than ever how to treat, even cure some kinds of, cancer. But we still don't do enough to PREVENT it. We just don't want to have to change our lifestyles, or we are afraid... I don't know. There still is a sense of shame. Why would a 37 year old woman have colon cancer? Well, I'm overweight and eat horribly, so it is easy to feel embarrassed. But who knows — maybe it is because I lived where I did as a kid and was exposed to toxins. My husband and I were astonished to read some statistics about lung cancer research after my Dad's diagnosis. The number of people who die of lung cancer per $ spend on research is alarmingly higher than the number of people who die of breast, prostate, and colon cancer COMBINED. I think it is because lung cancer is so attached to smoking behaviors that we have a greater tendency to think "you did it to yourself." When I tell people my Dad has lung cancer — they ALWAYS ask "Does he smoke?" He used to, but actually has the kind of cancer that non-smokers usually get! What does it matter now anyway? He can't change it!

Anyway, I'm glad you and NPR are doing this. I know it is probably scary and makes you very vulnerable to the public. My blog was private, though sometimes strangers found it, and sometimes I just felt so NAKED to bear my soul. But as another poster remarked — it was also therapeutic. Thanks for giving us a forum to share.

Sent by Kelley | 4:40 PM ET | 11-29-2006

We are all exposed to someone we know. Yesterday as I was enrolling my father in Hospice as his cancer is no longer treatable; he looked at the hospice nurse and simply said, "I want more treatment. I am not ready to give up yet. I thought we could beat it." My Dad is an engineer who is used to having organization and control in his life and environment. This is incredibly hard for him, and his family, to face. After I returned to work later in the day I received a message from a dear friend who let me know her Mother was just diagnosed. I used to think the circle of life represented the pain of the death of a loved one was eased by the birth of another. Yesterday all I could think was now that one has entered into the final phase of his life, another one joins the fray and begins to battle for her life. It is so hard to make sense of it all. Thank you sharing your entire journey with us.

Sent by Karen | 11:17 AM ET | 12-01-2006

I recently was diagnosed with stage four non-small cell lung cancer. I stumbled on your blog when doing research on my cancer. I can't thank you enough for lifting my spirits and showing me that I am not alone. Take care of yourself, Mr. Sievers. I know I will take care of myself to the best of my ability. Chemo really is the pits, isn't it?

Sent by Brenda Y. Lynch | 11:29 AM ET | 12-01-2006

Leroy,

Thank you for giving those of us affected by cancer a place to "vent." I heard the last few minutes of a show you did on NPR on the Tuesday prior to Thanksgiving while driving to be with my family at Thanksgiving. I'm having the same thoughts you spoke of — will this be the last Thanksgiving for me? Before my diagnosis this past July, I never imagined it would be me and even after I was told I had "it," it seemed so surreal. Immediately my life changed. I was on a very aggressive chemo regiment and, like you, a very bad week, next week better then the third week was ok but the dread was still there that it would all begin again the next Monday... It was always the gorilla in the room for it never goes away - you just live with it. After 3 horrible chemo cycles, I was told it did me no good. Radiation is next. How could I have prevented this? I don't think I have the answer to that question since no one knows what caused it. Till I beat this, I'll keep motoring along. I know very well what you are going thru and my wish for you is that are able to whip this horrible disease and be returned to good health for many more Thanksgivings. Bless you.

Sent by Peggy | 11:36 AM ET | 12-01-2006

Leroy, you are right, it is sad. My dad was just diagnosed with skin cancer. I already knew people who had cancer, and unfortunately did not make it. But nothing could have prepared me for the bad news. When I found out about my dad, I was devastated. I had never felt so sad. Sharing our thoughts and experiences is priceless and comforting not because we like to hear about other peoples problems but because we can relate and become stronger.

Sent by Agustina | 11:42 AM ET | 12-01-2006

On Saturday, November 25, my wife, Eunice, lost her nearly three year battle with melanoma. She contributed several messages to this blog and encouraged me to read it.

She found the many messages here to be very meaningful and inspiring. I was grateful that she led me to this site.

I have been told numerous times since her death how her courage and strength in dealing with her cancer inspired many of the people with whom she came into contact. Her continued faith also inspired many of those people.

I just want to thank all the doctors, nurses, social workers and, most of all, all of you for being there and providing whatever support, love, and faith you could.

God bless you all!

Sent by Chet Bunnell | 1:01 PM ET | 12-01-2006

Leroy,

I was somewhat taken aback by your comment that I perceived to mean when you created this blog, you may have anticipated people with no links to cancer being interested. What a thought provoking concept for me. I don't know if I speak for everyone but before cancer, I could not imagine doing much in the "cancer neighborhood," if you will. Even when my mother was diagnosed and ultimately died after her recurrence of ovarian cancer, I did not immerse myself in the "club nobody wants to join." After my personal experience, I felt that as many people that had helped me along the journey, I had an obligation to assist anyone that has to travel that road so they don't have to feel alone on a well-traveled highway of life.

When I read the post above by Carol I thought to myself, "Hey, we Are the 'normal' now!"

I don't think of it as sad or tie an emotion to all the people around me getting cancer like I did before my cancer. I do, however, know in my heart the pain they feel deep inside when they tell me.

Sent by Ed Brown | 1:10 PM ET | 12-01-2006

Leroy,

Although I am saddened by how many people suffer and die from cancer, it is a sign that something has gone right. Humans are dying from other causes (heart disease, accidents, etc.) at much lower rates than in the past. So, more are dying from cancer, later in life. With recent advances in cancer biology, I expect that cancer mortality will recede as well, eventually. At that point, I guess we will all die at around age 100, with our bodies just giving out. I just hope that when this happens, the last years of life are of high quality.

Sent by John | 1:15 PM ET | 12-01-2006

Leroy,

I am unsure of the average age of your readers/listeners, but I hope that more my age are paying attention.

I am 21 years old, about to take on the world in May when I graduate. Sadly, I have to agree and say that cancer is almost as prevalent as the common cold, it seems. Since my mother had a tumor detected in her breast at the age of 40, I will have to have a mammogram when I am 30. A year and a half ago, she died from small cell carcinoma, lung cancer, but it was a rare case that was not detected in her lungs, but her rectum. She was 44. I have to have a colonoscopy at the age of 30 as well.

I understand early detection is key in the long run... but for me, that is only nine years away! And it scares me all my life, and especially since my mother's passing, I have been told, "You are so much like your mother! You look the same, act the same... " and on and on. Will I get cancer too? Will it choose me?

I am studying public relations and corporate communications, starting hands-on with internships next semester. But I can't help but wonder if I was meant to do more with the education I have received. Last year I wrote a scholarly article on grieving among college students, not even one year after my mother passed. That paper elevated me to another level I did not know I could reach on my own.

By reading your daily blog (and I am being as sincere as I can be here) you have given me courage to continue with discourse about cancer. This is the one and only place, other than my paper, that I have been able to open up. I hope you understand that you have started a revolution, at least sparked one within me, to carry on the legacy of our loved ones, and fight in their honor.

Sent by Amanda Schmidt | 1:19 PM ET | 12-01-2006

It is comforting and makes cancer patients feel "normal" to be able to talk with others going through the same experience. But in my opinion, your blog is far better than most support groups, either live or online. For one thing, no one voice dominates the conversation. Also, the discussion topics are on a higher plane, less about the nitty gritty of symptoms or treatment and more about the bigger picture, how cancer affects one spiritually. At the same time, your blog seems to provide a big enough tent that we can all find common ground without getting bogged down in our differing religious beliefs, etc. Also, a lot of very intelligent and articulate folks are posting comments every day, which makes it quite thought provoking. Thanks!

As for your comments about the increase in numbers of cancer diagnoses, do you know what the statistics say? I wonder just because I remember that when I was pregnant, everyone else seemed to be, too. Could it be partly just that we have an increased awareness of how many people have cancer now that we have it, too?

Sent by Doris | 1:30 PM ET | 12-01-2006

Your comment about people not responding to your blog but sort of telling you their story is so true. I was the care giver for my brother for three years. He lived with my husband and me during that time. My brother and I used to laugh about it. It sort of reminded us of a cat that drags in something and leaves it at your doorstep and waits for your response. I guess its some kind of automatic response.

Sent by Rosemary | 10:43 AM ET | 12-05-2006

I lost my husband to leukemia on Jan. 5, 2004. He was only 58 and at the top of his career as a university professor.

I have just completed a book about the last four years of his life based on e-mails and articles he had written as well as my own notes.

I have been reading your blog regularly with great interest. The daily challenges you are facing to live life as normally as possible as long as possible, to deal with the "courage" issue and worries about family afterwards, etc. I can certainly relate to.

One of his former students, who had experience in these things wrote: "Just remember, when you can no longer muster the strength to fight and you are ready to go, don't hold on for our selfishness. We will all eventually be OK, and, although we will miss you sorely and shed some tears at the thought of you being gone, you have made a tremendous difference in this world."

In response, Al wrote: "Please don't shed any tears for me. Hell, I'll be 58 in June and I've had a good ride.

Last summer on one of our trips to Dana Farber, I made it a point to visit the Jimmy Fund pediatric floor where all the kids being treated for cancer on an outpatient basis are. "These little ones and their families are truly heroic, reminding me that, in relative terms, I'm just a greedy old man who wants some more time."

I had Al put on palliative care only on January 1, 2004. The decision was the most difficult and painful one I ever had to make. Al had been adamant about his wishes regarding end of life care from the time of his diagnosis: No tubes, no machines. I had both our oldest son and his sister, a hospice nurse, with me for support. It is hard to let go.

Three days before he died, his transplant doctor who had been out of town for several weeks, stopped by Al's room to assess Al's mental clarity. When he asked: "Do you know who I am?" Al opened his eyes, smiled and replied: "Yeah, you're the guy responsible for all of this."

Doctor: "Al, you have been very courageous. We have learned a lot from you that will help other patients."

Al: "But will it help the children?"

Doc: "Yes. It will help the children too."

Al: "Then, I guess this all might have been worthwhile after all."

My heart goes out to you and your family. I wish you the very best as you struggle through this nightmare.

Sent by Eve Dalmolen | 11:00 AM ET | 12-05-2006

Leroy,

Thank you for allowing so many to witness your journey. Talking about cancer in such a public forum is certain to help others open up about their own stories and lessons learned.

Before my own diagnosis, I felt that there were many stories about cancer in the news. Now, I am amazed at how little coverage there is on the subject. Few stories document the journey ? from the diagnosis through the treatment plan - to the cure or through the palliative care. Shortly after the birth of my first son, I was diagnosed with a rare form of cancer for which there is no known cure. There have been many lessons along the path of my journey with cancer but the biggest that I would like to share comes from my quest to a diagnosis. I will spare the details other than that I had been seeing doctors for nearly five years before someone took me seriously enough to do a CT scan. I was told that my symptoms came from stress and that I should not pay so much attention to my body. I was told that I was "too young" to have cancer.

Had someone taken me seriously in the beginning, had I been a better advocate for myself, my diagnosis would not be "terminal." By the time I found a doctor to take my symptoms seriously, the cancer had completely invaded my body and I was told that I have two years to live. My son was only 14 months old.

I am guessing that you already know this story. Maybe you had to fight to be taken seriously, maybe it was a friend, or one of your readers. My story of continual misdiagnoses and dismissals is not unique. But it is another one of the cancer stories that go untold.

Please tell people the importance of listening to your body and being a strong advocate for yourself. Please share that there are many incredible doctors but as in any profession, there are those who fall terribly short. Please remind people that doctors often diagnose by the statistics which means we must trust our own body to tell us what is wrong so that we may properly and fiercely advocate for ourselves. We take months to interview the right schools for our children, the right nanny or daycare. We spend just as much time researching which camera we should purchase or what type of car. Why is it then, we don?t interview for a potential family physician? Take the time. Do your research and then, pick one. Stick with that one doctor (as long as they are conscientious listeners and clinicians) so that s/he can be a true partner in your health care. To me, there is no better gift that you could give to your loved ones this Holiday Season.

Thank you again for giving a voice to the journey that so many seem to travel alone.

Wishing you strength and healing.

Sent by Kate Hunt Mortenson | 4:35 PM ET | 12-05-2006

Is there room for yet another survivor? I've just discovered Leroy's blog and was reminiscing about last years holiday season, when my daughter was pleading with my oncologist, "Christmas without chemo, please." Not that it's any easier at any other time of year, but my heart does go out to those of us newly diagnosed at this time of year. My suggestion to you would be to refuse to allow your cancer to remove anything else from your life that's not necessary. Hair and dignity return, albeit not as rapidly or as completely as we would wish, but memories and traditions you should staunchly protect from this disease!

Sent by Maria C. McGuire | 4:56 PM ET | 12-05-2006

You know, I can't help but cry as I write this, read your posts. It's not that anything is especially sad as it is I suppose everything is still on the surface. This past year my 52 year old mother, aunt, grandfather, sister in law, brother in law and good friend were diagnosed with cancers. Sometimes, it's hard to not dwell on the negatives of the experiences, for there are plenty of good things that have come from it.

The day you find out is like a video montage where clips of images whirl around you. It's this parallel universe you never knew existed. It's like buying a new car that you never really noticed before, but now every time you drive down the street you see that model.

Cancer has been that for me. When you ask if there is anyone that hasn't been touched by it yet, I imagine there is, but it's probably on its way to them right now. Everyone I've come across this year has their own cancer story, either personal, or via a family member.

Your comments have hit so close to home, especially about the garage being full. One day whilst taking my mother for chemo, all 20 of the chairs were full and she had to wait. I soon realized it was like that every day. The gamut of emotions you go through is truly amazing. From absolute terror, depression, extreme anger, to bad puns, sarcasm used at a coping mechanism to rejoicing that the afflicted person you love actually wants some ice cream and then eats it!

My feelings of helplessness lead me to purchase more rubber bracelets, cheesy t-shirts, car magnets and like, than any sane person should. but these are the things you do when people you love have "hurts" you cant fix. so you latch on to anything that makes you feel in control of the situation. i figure if nothing else, ive got two more people thinking about, and two more people sending healing thoughts to my family who needs it.

All in all, I'm going to take this family's cancer as a f——- up blessing. We are closer than we have ever been, relationships that were once non-existent have blossomed and we know exactly what we mean to one another. They say don't waste your flowers on the dead, and I never intend to do that again.

With all of that said Leroy, know that there is one more person in this world that is thinking of you and sending you positive thoughts.

Sent by Summer Genetti | 2:50 PM ET | 12-06-2006

I have to spill this out:

At age 33 (I'm 35 now) I was diagnosed with stage 4 colon cancer. The doctor told me my diagnosis was like hitting the lottery at my age.

I started hearing cancer stories immedietly. First, one of my wife's coworkers had colon cancer at age 28. Theres maybe 20 employees in her company by the way. Then my friend informed me about an acquaintance of ours who had colon cancer at age 32. Then six months later my artist peer and casual friend lost her battle to breast cancer at 36. Then a few months after that, my painting subcontractor was diagnosed with pancreatic cancer. Then one of my best friends told me his 37 year old sister had breast cancer. One year after that, his other sister got breast cancer at 34. There was very little cancer in his family... was. Then I found out a friend who I lost touch with for a year and used to live down the hall from me had thyroid cancer. During my last CT scan on Dec. 1, my technician was wearing a wig, breast cancer she told me.

When I was diagnosed I dropped all my jobs and let my lead carpenter take over. The homowner I was working for was very understanding. His son had Non-hodgkins lymphoma when he was eleven. Hes fine. And for the record, even with his top notch IBM health insurance, his sons lymphoma almost broke the bank. Ive heard this a lot.

When my wife was pregnant, I remeber seeing pregnant women everywhere. I wish it didn't have to be that way for cancer. Seeing so many people with cancer at this age is like seeing a bunch of 12 and 13 year old pregnant girls. Please don't tell me they're all around too!

Thank you so much for this blog. Thank you for letting me reply and my apologies for writing too much.

Sent by Reuben | 2:56 PM ET | 12-06-2006

Doris,

Granted, the "red car" syndrome is part of the equation, but cancer is an epidemic stage, and I tend to believe do to the vast number of cancer cases, regardless of type, its due to chemicals. Our DNA didn't change. For instance, breast cancer I have been told by my doctor seems to be coming from environmental. Products, pesticides, water, etc... Personally, I did at least 100 hours of research to find out what her "environmental" comment meant. I am fit, eat right (how I was suppose to know my produce was loaded with pesticides that breast tissue loved), don't drink or smoke, or take HRT.

I generally have taken responsibility for my health, but something went wrong. We live in a toxic world. I use to call them "Environmental Nuts," "Health Nuts," but now I respect them. I use to defend big business, as a right wing nut case, I am living a different mindset.

Sent by Laura | 2:58 PM ET | 12-06-2006

My mother was diagonosed with breast cancer in 1997 she lost both breast as the cancer was very severe, prior to that her mother had died of breast cancer in 1994, my father's mother has just overcome breast cancer also. i am so worried that i have it too. i am 19, and i recently discovered a lumb about the size of a 5p piece on my left breast, i went to the doc, and she has refered me to the hospital, but i am so worried, im very sorry if this is the wrong forum to post this to.

Sent by stacey | 10:03 PM ET | 05-15-2007

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My Cancer will be updated Monday through Friday with posts and commentaries from Leroy Sievers. A journalist for more than 25 years, Leroy has worked at CBS News and ABC News, where he was the executive producer at Nightline. You can follow his story through this blog, his weekly podcast and his monthly series on Morning Edition.

 
 

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