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A Letter to Oprah @ a show

scouty
scouty Member Posts: 1,965
edited March 2014 in Colorectal Cancer #1
I have been thinking about this a very long time and finally have taken the time to put pen to paper. I don't expect to ever hear from her but at least I tried and some of her competitors will be getting the same message!!!!!! I hope y'all enjoy and understand what I mean in the email.

Oprah,

I am an avid watcher of your show and am becoming increasingly concerned that you are misleading women in the United States about their cancer risks. Don’t get me wrong, I love that you have shows about woman and cancer that raise awareness but you are not reflecting the real statistics for all woman. I also know your show is seen by women all over the world and over time I hope to learn more about cancer rates in places other then the US but until then this message is all about the real stats in the US as published by the American Cancer Society.

A little history about me and why I feel so compelled to send this email to you. At the age of 49 in 2003, my colon perforated and I almost died from the subsequent acute peritonitis (infection of the abdomen). I thought I was healthy at the time. The doctors and their testing missed my cancer, but 4 months later in an appointment to schedule the reversal of the temporary colostomy bag I was given during the emergency surgery for the peritonitis I heard the dreaded news,“You have cancer”. I was seeing a general surgeon that I “met” in the emergency room at my local hospital. Luckily after I heard that news, one of my brothers, an Ear, Nose and Throat surgeon, talked me into to going to a major cancer center and it was by far the smartest thing I ever did. I went for the second opinion at one of the 121 (at the time) comprehensive cancer centers (the University Of North Carolina School Of Medicine in Chapel Hill, NC) about 60 miles from me as soon as I could get an appointment with a very well known GI oncologist. After more testing with better machines on April 2nd 2004, I found out my cancer had spread to my liver and left lung. My prognosis was not good; I was given 2-3 years to live. As I look back on it, if I had let my original surgeon do the surgery he wanted I would be dead today, there is NO doubt in my mind. I don't blame him, I just had no idea how much more intricate and exact some testing machines can be and how important that is early on. I was lucky my brother did. After some serious chemo and many alternatives I am currently NED (no evidence of disease, you have to be NED 5 years before the docs/insurance will declare you cancer free) and have been since October of 2004. My journey has been very unique since I am in what they call a non-surgical remission which seems to be very rare for Stage IV cancer patients. Enough about me, now back to my idea for a show.

Over the last few years, I have seen you have several cancer survivors on your show but can not remember a single cancer survivor that did not have breast cancer, other then Lance of course. I saw the woman that Lance gave the bike to, Melissa Etheridge, DK's friend, the recent woman who chose to have the full mastectomy, and most recently, Elizabeth Edwards. You also discussed the issues around the new cervical cancer vaccine on a recent show. Your magazine is wonderful with it’s support of “pink” and breast cancer but you seem to ignore all the other cancers that woman can get. Did you know that each of the major cancers have an awareness month just like October for breast cancer? Did you know that most cancers have their own colors like breast has pink? Us semi-colons (colorectal survivors, that is what we call ourselves, for obvious reasons) think our color should be brown instead on dark blue (well at least some of us do. A sense of humor is required when you have bootie cancer). I hope you smiled over that comment. Since there are more cancers then colors, some share the colors and ironically testicular cancer’s color is pink just like breast cancer. Can you imagine Lance in pink????

Now for the stats I think you need to articulate to the world. According to the American Cancer Society in their recent published projected estimates for 2007, over 678,000 women in the US will hear the dreaded, “you have cancer” words this year. Of them, 74% will be cancers other then breast!!!!!! The same report says over 270,000 women will die of cancer this year, 85% will die of a cancer other then breast!!!!! As far as cervical cancer goes here in the US, less then 1% of all women that die of cancer will die from that cancer. The commercials about the vaccine are just that, propaganda laden commercials that make big bucks for pharmaceutical companies that you just supported on your show. I have lost many a friend from the colorectal cancer discussion board on the Cancer Survivor Network that kills many more women then cervical cancer ever will with little fanfare. Did you know that Audrey Hepburn died of colorectal cancer? Did you know that Ronald Reagan had it while he was president? I suspect Fidel Castro is dying from it too. I just don’t understand why so many are afraid to talk about “bootie cancer”. In the last few years more women then men are being diagnosed with it at all ages (I have lost cyber girlfriends in the 20’s, 30’s, 40’s, 50’s, etc.) but it is still know as an “old mans cancer”.

I could go on for days about cancer, but need to get back to my idea for a show. How about having a show with all female or just cancer survivors? I don’t know how many people can fit into your audience but you could have the percentage of people diagnosed represented by the numbers in your audience. With patients/survivors standing up in a small crowd, you could make a huge impact on awareness of all the major cancer killers as the groups answer your questions. As an ex corporate manager I believe in the 80/20 rule. I bet you know that rule. Concentrate on the 20% of the issues that cause 80% of your problems first then tackle the rest. I feel the same way about cancer but women need to know they should be concerned about other cancers, not just breast!!!

And let’s please start talking about prevention instead of just cure! I wouldn’t wish what I have gone thru on anyone..well maybe Bin Laden.

AND I would like to extend an invitation to you, Gayle, and/or a film crew to Nashville, Tenn. September 12-16 of this year for the 5th Colon Palooza. It is a gathering of colorectal cancer survivors that meet yearly to celebrate life and remember our dear friends that inspire us to fight and live on. It is not dismal, we have a blast while we carry our lost ones proudly with us on our shoulders. Please join us and if you can’t, at least tell the world that woman can get another cancer other then breast.

I have other ideas and have sent you a few other letters. Maybe one day you will reply.

Lisa P.

Comments

  • KathiM
    KathiM Member Posts: 8,028
    Wow! You GO, Girl!!!!

    You are such an inspiration...could not have said it better myself!!!

    I hope she DOES come in September....I'll show her my scar....AND my 2 ribbons...the blue and the pink...

    (I remember bursting into tears when they told me about the breast cancer...not because they found it, but because I look HORRIBLE in PINK!!!)

    Hugs, Kathi
  • crazylady
    crazylady Member Posts: 543
    Hi Lisa,
    What a great letter! I've thought about writing to Oprah myself, but I have no guts and was afraid she might answer. It would be so awesome if Oprah actually showed up in Nashville!!
    Jamie
  • ron50
    ron50 Member Posts: 1,723
    Hi Lisa,
    That explains the non-surgical remission,the cancer fled in terror. You go get em girl,seriously you and Foxy(Virginia) are my heroes . Ron.
  • foxy
    foxy Member Posts: 188
    ron50 said:

    Hi Lisa,
    That explains the non-surgical remission,the cancer fled in terror. You go get em girl,seriously you and Foxy(Virginia) are my heroes . Ron.

    Hi Ron, yes Lisa is one in a million. As for me at the moment, I am full of the flu and asthma and feel like s**t. My prednesone and antibiotics for my chest arrive tomorrow morning, thank goodness. I would love to hear how you are doing now, and Lisa------- you go girl!!!!!!!

    Virginia.
  • robinvan
    robinvan Member Posts: 1,012
    Wow!! Lisa P. Great letter. You obviously put a lot of thought and heart into it. I hope you get a response and some airtime.
    Rob;
  • kmygil
    kmygil Member Posts: 876
    YES! YES! YES!!!!!
  • davidsonxx
    davidsonxx Member Posts: 134
    What a great letter. It will be awesome if she decides to go with the idea. Nashville would be the perfect place to film it. We need to get the word out so less women have to travel the road we are on. Way to go!!
  • jerseysue
    jerseysue Member Posts: 624
    Lisa that was a great letter I'm not sure why I'm crying right now but I am. You go girl and I'll see you in Nashville.
  • StacyGleaso
    StacyGleaso Member Posts: 1,233
    Hey Scouty!

    It was inspirational to read your journey! Although I already am very familiar with your cancer road trip, it was still a very good read!

    I disagree that Oprah should be in Nashville, though. Her "celebrity-ness" will overshadow the TRUE STARS....THE SEMI COLONS! Instead, Oprah should just feature you and your miracle status on one of her programs. It would be WAY too hard to keep the true spirit (including drinking spirits! lol) of our Paloozas with cameras and spotlights. Additionally, folks shouldn't attend in hopes of seeing Oprah...they should attend to see the survivors of this site and what THEY mean...miracles and all!

    Hugs,

    Stacy
  • CanadaSue
    CanadaSue Member Posts: 339
    Lisa, YOU ROCK GIRL!

    Since my husband was dx'ed Jan 06, whenever someone mentions they have not been feeling well, I say "Run - don't walk to your doctor.
    Way too many people are NOT aware of the symptoms
    of colon cancer, or they just ignore it figuring it will go away with time. Someone has to stand up, and make people listen to what their bodies are telling them. By the time my husband was dx'ed they figure he had the cancer for 8 - 10 years (was told he had IBS), just yesterday our daughter's father-in-law was also dx'ed with colon cancer (they have asked our daughter to go with them for the appointments - she now knows all the questions to ask and will not be satisfied until she gets all the information).

    Lisa, I sincerely hope Oprah responds, and they do a show on Colon Cancer.

    Sue
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  • jams67
    jams67 Member Posts: 925
    crazylady said:

    Hi Lisa,
    What a great letter! I've thought about writing to Oprah myself, but I have no guts and was afraid she might answer. It would be so awesome if Oprah actually showed up in Nashville!!
    Jamie

    Looks like you couldn't sleep last night. Hope all goes ok with your surgery today. I'm still praying for you.
    Jo Ann
  • sladich
    sladich Member Posts: 429
    Lisa,

    A very powerful letter. I look forward to meeting you in Nashville.

    Debbie
  • Betsydoglover
    Betsydoglover Member Posts: 1,248
    Great letter, Lisa. Maybe you'll hear something, but speaking of big bucks, Oprah is definitely that (even though I think she does some good a things with her big bucks.)

    Regardless, this is a message that needs to get out more. At least colon cancer is getting more awareness than was previously the case - every day now I hear on the radio an ad for getting a colonoscopy (of course it the Dad who is asked to get it, but I won't quibble very much.) There is so much farther to go and people like Oprah could do much to increase awareness.

    That said, as a mother of a young woman, I am all in favor of cervical cancer vaccines, because a preventative vaccine against any type of cancer is a good thing. (I am not going to worry about sex and "morals" in this context - I simply don't want my daughter to get cervical cancer or any other kind.)

    Meanwhile - great letter and I certainly hope it elicits some response.

    Betsy
  • claud1951
    claud1951 Member Posts: 424
    You go girl! Great letter.
  • usakat
    usakat Member Posts: 610
    Hi Lisa,

    Great letter - thank you for writing it on behalf of all women, especially those of us who have or have had colorectal cancer.

    I am all for advocacy and the more I get to know you through our group, the more I know that you are a perfect voice. I truly hope you hear something from Oprahs' group about a future show, but I agree with Stacy that we should keep our Paloozas a celebrity free zone, unless they are a survivor, sans camera crew.

    I too have been thinking about letter writing to various people however, I've been leaning more towards politicos than celebrities. I would like to see more education extended to not only consumers of health services, but also to health care providers and insurance companies. More information about colorectal cancer risk factors, symptoms, early diagnostics, and like you said, information about prevention really need to be promoted.

    The local ABC news affiliate in my town has been promoting "Bosom Buddies," a buddy program to promote breast health for women. I wondered if we SemiColons could promote a similar program to promote colonoscopies for men and women of all ages who are at risk and should be screened. We could call it Colon Comrades, or Crapper Companions-okay, maybe not that one...but you get what I mean.

    People like Katie Couric and Molly McMaster have forged a trail for us. I suppose it's up to us to now help blaze it.

    Thanks for the inspiration, Lisa. I think I'll start drafting up a good letter about colorectal cancer, especially colorectal cancer that affect people under age 50, and get them in the mail soon.

    Let us know if you hear anything from Oprah, or from any other recipient of your fine letter.

    Thanks again.

    Katie

    (btw - Sponge is out in the middle of some ocean somewhere protecting us from bad guys...he'll be back soon. I for one, can hardly wait.)
  • alta29
    alta29 Member Posts: 435
    I wrote her a letter about a year ago...it was more about insurance.....and about a cure..for ALL cancer....Didn't get a response...But this is what helps....we need to keep on touching doors....some will open...Like Kathie...I can also show my 2 scars....( breast & colon ) but you are sooooooooo right !!! A lot of people will die because they dom't have the right info, or any info at all....I so much hope that she replies to your mail....
    Graet job !
  • jana11
    jana11 Member Posts: 705
    Bravo! You remain a true inspiration for a multitude of reasons!

    Can't wait to join you at the next CP! jana
  • scouty
    scouty Member Posts: 1,965
    foxy said:

    Hi Ron, yes Lisa is one in a million. As for me at the moment, I am full of the flu and asthma and feel like s**t. My prednesone and antibiotics for my chest arrive tomorrow morning, thank goodness. I would love to hear how you are doing now, and Lisa------- you go girl!!!!!!!

    Virginia.

    Virginia,

    You and so many others here are some of the reasons I am still alive today. I will NEVER forget where I came from!!!! As Amy said earlier this week, once a semi-colon always a semi-colon.

    I hope you feel better soon and thank you so much for being here giving all the hope and inspiration you do. The main reason this site is so great is because long time cancer free semi-colons like you stick around and help others.

    You ROCK!!!!!

    Lisa P.
  • fedester
    fedester Member Posts: 753
    lisa,
    you go girl !!!!!!!!!!!!!
    great letter.
    be well
    never,ever give up!!!!
    bruce
  • 2bhealed
    2bhealed Member Posts: 2,064
    YOU GO GIRL!

    (FYI--Ronnie's doctors put him on a whole grain diet to help cure his cancer).

    peace, emily who hopes to sit in that audience!
  • Moesimo
    Moesimo Member Posts: 1,072
    Lisa,

    What a great letter. I sent a letter to Katie Couric after my diagnosis. I never received a response.

    Good luck and i hope you get to be the star of the show.

    I cringe everytime I read that you should have a colonoscopy at 50. there are so many of us who were diagnosed younger than 50. If I had waited until I was 50 I would not be writing this.

    Maureen
  • jsabol
    jsabol Member Posts: 1,145
    Great letter, Lisa, hope this gets through to Oprah. It would be wonderful to have her show help spread the word; the information can save lives. Judy
  • HAZELBUG123
    HAZELBUG123 Member Posts: 1

    Hey Scouty!

    It was inspirational to read your journey! Although I already am very familiar with your cancer road trip, it was still a very good read!

    I disagree that Oprah should be in Nashville, though. Her "celebrity-ness" will overshadow the TRUE STARS....THE SEMI COLONS! Instead, Oprah should just feature you and your miracle status on one of her programs. It would be WAY too hard to keep the true spirit (including drinking spirits! lol) of our Paloozas with cameras and spotlights. Additionally, folks shouldn't attend in hopes of seeing Oprah...they should attend to see the survivors of this site and what THEY mean...miracles and all!

    Hugs,

    Stacy

    I am a cervical cancer survivor. I am very much in favor of the hpv vacine! If the hpv vacination would have been available when I was a young girl, I would not have ever got cervical cancer in the first place.
    If the vacine could save the life (or cancer turmoil) of one person; it is worth it!
    I was diagnosed in 96'
    had a minor recurrence in 97' 98' and 99'
    Then nothing until 2004.
    In 04' I had a major recurrence that change my life forever. Chemo-radiation -surgeries-radiation implant.
    It was taxing on my body and a huge interuption to my life and my young childrens life.


    I absolutely love Oprah... Wish I could be on her show to tell my story of inspiration!
    Cervical cancer can lay dormant for years and then when you least expect it it rears its ugly head.

    My journey is unique. I have jumped huge hurdles and so proud to be alive today!
    [email protected]
    Yippeee to all cancer survivors! We are all in the same boat to a degree.