The One We Don’t Like to Talk About

blue-ribbonRegular readers at AAR AfterHours have probably seen my yearly health nags about mammograms, and may now know that I’m a breast cancer survivor. It’s something I’ve been very open about, and something my friends — both online and in real life — have openly talked about with me.

But with the exception of my fellow AAR staff members, most people here don’t know that one year ago, I was diagnosed with colon cancer. My experience with colon cancer has been completely different from breast cancer. While friends and colleagues talked frequently about my breast cancer,offered support and encouragement, I’ve found in the past year that most people just don’t want to talk about colon cancer, really don’t want to think about it. Well shoot, I never wanted to talk about it before I got it either.

In fact, I’ve thought long and hard about whether I should even post this here, afraid of what people would think, and whether I might offend someone. But that’s just the problem, so I decided to go for it.

While we all may complain that mammograms can pinch, let’s not even get started about the dreaded colonoscopy and the prep that goes with it. But you know what? No matter how awful the prep is, the alternative of letting the cancer grow is really, really horrible. While we women learn about the importance of getting mammograms at a fairly early age, we need to spread the word more about the need for getting a colonoscopy, because they truly do save lives.

Most AAR readers are too young to have to worry, personally, about needing a colonoscopy. It’s generally recommended that you get your first colonoscopy when you’re 50. But if there’s a history of colon cancer, or some other cancers, most doctors recommend that you begin earlier. And no matter how young you are, you undoubtedly have mothers, fathers, aunts, uncles, grandmothers, or grandparents who are over 50, relatives and friends you can talk to, encourage to get a colonoscopy.

In other words, encourage your friends and family not to be an idiot like I was. I had the history, and should have had the test much earlier than I did, but it just seemed really icky. Too icky to contemplate, too icky to talk about. But if I’d had it much earlier, that nasty tumor might just have been a polyp.

But lest this be a complete downer of a post, let me end on some positive notes. Once again, I was lucky, with another Stage One (the good stage) cancer (although if I hadn’t been so put off by the test it probably never would have gotten to that point).

I have been lucky to have some friends who stood by me, and were unbelievably supportive. Chief among these, are my fellow AAR staff members, who came through in just unbelievable ways for me last year. Yes,  I received cards and flowers (beautiful flowers) from the AAR family. But oh my gosh, they did so much more. They called and sent texts on a daily basis while I was in the hospital and in the weeks after. They sent books, offered to take me into their home to recover, filed tax extensions for me, and sent me a beautiful stuffed kitty in the hospital because they knew how much I was missing my lovely kitty Princess. I am truly privileged to be a part of the AAR family, and will never forget what they did for me.

And the final, and best, positive note? This past week I had my one year post-surgery colonoscopy. I’ve truly lived in dread and terror of what they would find for one year. But the results? Completely clear, with nary a tumor or polyp, making me:

LinnieGayl, one year colon cancer survivor

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39 Responses to “The One We Don’t Like to Talk About”

  1. Marcella says:

    LinnieGayl, I’m very happy for you that you’re in the clear.
    And yes, people hardly ever want to talk about it with someone who has cancer – some even try to avoid the word cancer at all times, as if they are scared to ‘catch’ it.

  2. Tee says:

    Congratulations, LinnieGayl. That is truly a feat to celebrate. We too have colon cancer in my family—specifically, my brother and father. As with you, my sister and I were encouraged to get colonoscopies and we did so. Also, as you mentioned, the prep is really the worst. Once you’re past that, the rest is a breeze. You don’t feel a thing, but wake up afterwards with it being finished. After having had three colonoscopies, you even begin to find shortcuts to the prep. For instance, eating lightly for a couple of days prior to the procedure (one day more than is usually suggested). Then when you do take the prepared stuff, you may do well on less of it. The stuff can also be mixed with a few different things other than water. Check online as to what those liquids can be. Use Desitin cream or some other ointment in the “area” that will be getting the most activity and irritation during the time the preparation does its job. It’s a small thing to do, but it really helps with the comfort. If my Dad had gotten this exam some years before his tumor was discovered, it would still have been a polyp and could have been simply snipped off during the scope procedure.

  3. maggie b. says:

    LinnieGayl, so glad things went well on the last checkup. Having the option to do these kind of checks is a blessing. Many places in the world it is not as easy as it is here. I had one done a few years ago and am doing one again in a year (yikes!). But you know, however painful the test is, however long or inconvenient it can appear people need to understand something. Cancer treatment is far more costly, time consuming and debilitating. These tests can seem embarrassing but they save so much embarrassment. Painful but they spare you so much pain. And time consuming but they add years to your life.

    Thanks for posting about this. People often need reminders. Women especially — we care so much for others we forget to do the things that help us keep on caring.

  4. linniegayl says:

    Thanks, Marcella, Tee, and MaggieB.

    Tee, those are wonderful suggestions for making the prep go easier. I wondered afterward (too late) if eating very light for a few days before might have been a better choice.

    MaggieB, you’re so right about treatment being so much worse than the inconvenience and cost of the preventive tests. I feel very fortunate that I’m able to have the tests now.

  5. LeeB. says:

    Congrats LinnieGayl! I know how hard it’s been for you and I’m so glad you are all well!

  6. linniegayl says:

    Thanks, Lee. It’s a huge relief.

  7. carrie says:

    Congratulations on the one year mark! The worst part of the colonoscopy was the prep for 24-36 hours before. The procedure itself was not that big a deal. My husband and I both did the colonoscopy at 50 thing. Well worth the peace of mind.

  8. linniegayl says:

    Carrie, I agree that the prep is really the worst part of the colonoscopy. Don’t remember anything about the actual test. In fact, I remember being wheeled in to the room, and then, what seemed like just seconds later, saying to the doctor “what are you going to do now,” and she said, “it’s over.”

  9. JMM says:

    Glad you’re doing well!

    Having had several colonoscopies, (my mother had polyps) I can honestly say the prep is the worst part. Next time, I will talk to the doctor about a different kind – I cannot drink that huge bottle of cherry flavored SLIME ever again.

    Actually, the second time, I had two small bottles; I don’t know why she went back to the icky cherry flavored gallon of gunk.

    Have you ever read Dave Barry’s column on colonoscopies? Google it. It’s hysterical.

  10. linniegayl says:

    JMM, thank you so much; I hadn’t read Dave Barry’s column before, but it’s wonderful! Some of my favorite take-home messages from it:

    “And then it was time, the moment I had been dreading for more than a decade. If you are squeamish, prepare yourself, because I am going to tell you, in explicit detail, exactly what it was like.

    I have no idea. Really. I slept through it. One moment, Abba was shrieking “Dancing Queen! Feel the beat from the tambourine . . . and the next moment, I was back in the other room, waking up in a very mellow mood.” (His doctor was playing Abba in the room)

    “But my point is this: In addition to being a pathetic medical weenie, I was a complete moron. For more than a decade I avoided getting a procedure that was, essentially, nothing. There was no pain and, except for the MoviPrep, no discomfort. I was risking my life for nothing.

  11. LeeB. says:

    JMM: Great column. Dave Barry is always so funny but he’s definitely funny and honest in that column. My favorite line: “… Andy showed me a color diagram of the colon, a lengthy organ that appears to go all over the place, at one point passing briefly through Minneapolis.”

  12. Tee says:

    JMM: Next time, I will talk to the doctor about a different kind – I cannot drink that huge bottle of cherry flavored SLIME ever again. Actually, the second time, I had two small bottles; I don’t know why she went back to the icky cherry flavored gallon of gunk.

    I also had the two smaller bottles the last time I had the procedure. I have since heard that they are not that great for your body, especially the kidneys. Don’t know if that’s true. You would think, after all the colonoscopies that are done in the world, that someone could come up with a better way of accomplishing the clean-out.

    I had trouble too finishing the larger bottle. That’s why I went to eating light one more day than was suggested. Just some small amounts of grilled chicken, no breads or salads, maybe cottage cheese. Then the next day, only liquids as suggested. You’d be surprised how helpful that can be for the process. Obviously, the more you eat, the more has to be… well, I think you’ve got the picture.

  13. JMM says:

    Tee – I physically CANNOT drink it. I cannot get it down my throat. My body is so repulsed, I cannot even drink flavored water anymore.

    Last time, I (WAY TMI) ended up vomiting it up after forcing 1/4 of the bottle down my throat and had to run to the store to get… something else to reach my goal. Someone said that there’s another prep – pills. Horse pills. Well, I can swallow pills.

  14. jojo says:

    LinnieGayl: Great news about the clean bill of health!

    My sister is an 11 year colon cancer survivor. She was diagnosed when she was 50 an had a stage one just like you did. So when I turned 50, I trotted right down to her doctor and had one as well (and thankfully, I am fine).

    Interestingly and sadly, while she was in the hospital recovering from the surgery, her neighbor (a man in his 60′s) passed away from his battle with the same disease. He, however, had refused to go get checked at the early signs becaus of the “embarrassment” of it all and so alas, it went too far and he lost his battle.

    So, when people tell her, “I know i should get checked, but it seems too awful, and sooo embarassing” she says to them, “You think that’s embarrassing? Wait till you get some symptoms, then wait too long and guess what? You’ll still have to get checked, and you’ll get rechecked numerous times and go thru a whole lot more embarrassment than just a simple colonoscopy once every ten years, plus you’ll be fighting a terrifying disease as well. So go ahead, avoid it. But having had both,” she says, “I’d much rather have a simple colonscopy than the actual cancer!” And what can they say? She’s only speaking the truth from the perspective of someone who has experienced both…

    Because what people might not realize is that colon cancer really is one of the few diseases where if you get checked regularly BEFORE you have it, you really don’t have to get the disease. Yes, folks, it’s actually preventable! How many diseases can you say that about?

    And from my (somewhat biased perhaps) perspective, I can tell you that compared to having a sister with colon cancer, my colonoscopy was ABSOLUTELY NO BIG DEAL. I want to do as much as I can so that with everything she’s gone through, at least my sister won’t have to experience the shock and paralyzing fear of having a sister get colon cancer (like I did).

    So live long and prosper LinnieGayl!

  15. linniegayl says:

    JoJo, you words are just beautiful, and so very true. Thank you so much. I’m very glad that your sister is doing well.

  16. Susan/DC says:

    @linniegayl: So glad to hear that you’ve come through your one-year post-cancer checkup free and clear. I’m definitely an advocate of getting regular colonoscopies, yucky as it may seem. My husband needed one in his 40s because he had ulcerative colitis, and I remember his vomiting the awful liquid (a la JMM). By the next time he had one he got the pills, so that part of the process went more smoothly. They are horse pills, but you can cut them in half so they aren’t so bad and take them with ginger ale (or any clear liquid) rather than water, which also helps. I didn’t want to have a colonoscopy, but one day the light bulb went off that dying of colon cancer was a stupid way to die when it could be caught and cured at the small cost of a day’s discomfort and minor embarrassment.

  17. LinnieGayl says:

    Susan/DC, the pills sound like the perfect alternative for your husband, and I’m very glad the light bulb went off for you.

  18. Beth says:

    LinnieGayl,

    Congrats on your one year mark! Yesterday was a big day in my family: my niece Kimberly, age 28, was told there were no new growths after her pet scan following a 32 weeks of chemo. Yes, you read that right. She was diagnosed on July 1 at age 27 with stage 3C colon cancer. She had a lemon size tumor removed from her colon. Out of 20 lymph nodes biopsied 6 were cancerous. Kimberly is not out of the woods yet. She goes back to the Dr. on May 16. At that time he will decide if she needs radiation.

    When Kimberly was diagnosed she was brought in to talk with an oncology group. They had never seen anything like this in someone her age. Her father had just had colon cancer the year before but he was in his 50′s.

    During Kimberly’s cancer treatment she worked as long as she was able. She is a kindergarden teacher. She had a blood clot form in August and has had to have every other day injections. She got the swine flu in September. She and her fiance WON a DREAM WEDDDING so she planned a wedding and was married the day after Christmas. She has had a positive attitude from day one.

    Colon cancer does not know gender, race or age. Don’t wait until you are 50. If, for ANY REASON, you display ANY SYMPTOMS, demand a colonoscopy. She saw a Dr. for 6 months before an emergency room Dr. decided to run a cat scan.

    Today, Kimberly is back at work and in June will be going on her honeymoon. If she has to have radiation that is ok. We have our niece. You can believe everyone in our family talks about the illness no one wants to talk about.

    BTW, Kimberly is now a guest speaker for the Colon Cancer Alliance. She has done several talks and I believe that she really makes an impact.

    Ladies, get out there and be your own health advocate. Get your butt checked!

  19. Elaine C. says:

    I’m glad you’re doing so well. You have a bright future.
    The writer Emily Bryan had colon cancer a couple of years ago. She very briefly wrote about it on her website. When I met her last year she was so bubbly and enthusiastic about her writing and her life.
    I think having such a threatening illness can be the push to really appreciate life.
    I wish you the best.

  20. linniegayl says:

    Thanks, Beth and Elaine.

    Beth, I am so sorry about your niece, but that is a very powerful message you have written. Any signs? See your doctor!

    Elaine, you are so right about it making you appreciate life more. I met up with a friend earlier this week who had colon cancer at about the same time I did. We both noted how small things that used to make us very angry no longer seem important at all.

  21. grammalg says:

    Hi Linnie. What great comments you have gotten here. I also am glad you have been given a clean bill of health. YAY to cancer survivors!

    You and I going through it at the same time was a strange happening. We knew each other, but this just made one more connection between us.

    Mine was stage 3, and the six months of chemo (along with feeling like crap and losing 75% of my hair) saved my life, even though it felt like it was trying to kill me at the same time. Yes, I tell everyone I know and meet that colonoscopies save lives, whether they want to hear that or not. If I had listened to my daughter, who had been hounding me for two years beforehand to be checked, then I wouldn’t have had to go through that.

    I, also, have had my colonoscopy and CT scan and all is well with me too. So, cheers my friend! We celebrate life together!!! To our health! :)

  22. LinnieGayl says:

    grammalg, surviving is a wonderful thing, and the feeling of getting good results after the CTs and colonoscopies can hardly be described. Keep surviving!

  23. Olivia Smith says:

    my mom suffered colitis last year and it was quite an expensive disease.`:*

  24. my mom suffered colitis last year and it was quite an expensive disease.”“

  25. Maya Bailey says:

    Colon cancer can be avoided if you just keep high fiber foods in your diet.~*-

  26. Melanie Long says:

    the former president of the philippines Corazon Aquino died also of colon cancer-,’

  27. my dad suffered from colitis a couple of years ago, this disease is quite painful.~~

  28. colitis is damn right painful when you have it. i am really afraid of this disease~~,

  29. colon cancer is a very nasty and painful disease, i have a friend who died in this disease and it is not a pretty sight”.~

  30. Lilly Bell says:

    colitis is damn right painful when you have it. i am really afraid of this disease*.’

  31. i was suffering from colitis a couple of months ago and believe me, the pain is horrible “-’

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