I Don’t Have a Normal!

Yesterday, I was getting a surgery followup examination.  My doctor was trying to make sure that I was taking anticonstipation medicine because the narcotic pain killers cause constipation.  (We end up talking to doctors about bowel movements much more and for many more reasons than one would think.)

As far as frequency and amount of BM, he asked me “What is your normal?’.

I thought about it for a moment and just blurted out “I don’t have a normal!”

At first he thought that I was joking but upon thinking a minute he said “Oh.” and then changed the subject.

Thinking about this later, I realized how awfully true this is.  We carcinoids don’t have a normal.  It’s different every day, averages don’t matter.  I guess that this is good disease for meditators because it will force you to live in the moment.

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I Don’t Have a Normal! was last modified: July 7th, 2013 by cy

8 thoughts on “I Don’t Have a Normal!

  1. Cy, just found your blog through a F/B friend. I too have Carcinoid Syndrome. I also have a larger spot on my liver as well as two large tumors just under the rib cage on my right side. There a also several smaller ones in the small intestine. They say they can’t get to the one on my liver because of its precarious location. It’s been three years now and I’m quite anxious obout the liver. I guess my question to you is if you have any knowledge of Carcinoids as it relates to Agent Orange. I was “in country” in ’66/’67 and the Dept. of the Navy does exnowledge I was exposed to A/O but because my form of cancer does not show up on their list they have declined my claim. I too have had the G/B removed.

    1. David,

      There should be discussion about resecting the small intestine tumors. Most experts in carcinoid feel that resection of the primary will lead to longer survival and longer time to progression for the patient and the numbers are big! Maybe as much as double.

      Your mention of Agent Orange is the first time that I have seen it mentioned with Carcinoid. I would suggest that you search Carcinoid Cancer Foundation on Facebook and especially on their website http://www.carcinoid.org. Also search and ask the question at http://www.acor.org carcinoid group.

      I presume you are on Sandostatin. The smart surgeons always remove the gallbladder when they are doing liver surgery on us because that prevents them from having to perform another surgery later just for gallbladder problems.

      May you have the best possible outcome,
      Cy

    1. Ha! I have been on my back a lot because it is the easiest way to sleep since the surgery.
      I think short distances on the bike within a month or so.

      I hope your treatments and recovery from treatments are going well.

      Thanks,
      Cy

  2. Hi Cy,
    I just found your blog. I am a carcinoid patient and I am going in for liver surgery this Friday to remove 2 spots (1 cm and 8 mm), one on each lobe. My primary was removed six years ago. Your blog is inspiring to me and I am so happy to hear you’re doing so well. I hope your recovery continues to go smoothly and you can be back on your back ASAP..

    Many Blessings,
    Deb

    1. I guess that I usually took steps to be not “normal”. But, I never really wanted to extend that to bowel movements and other physical stuff.

      Cy

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