Learning to Live an Uncertain Life

annalexandria
annalexandria Member Posts: 2,571 Member
in Colorectal Cancer #1
NEDdish? NED-like? NEDesque? I can’t quite decide which word to choose to describe my present state. Think I might go with the last one, as it sounds all fancy and whatnot. Anyway, I’ve had two more scans since my thrilling NED scan in March. June’s PET showed an area of potential concern in the sigmoid colon (I still have colon left? Who knew?). Not definite, but the radiologist suggested a sigmoidoscopy to check things out. Dr. Delusional (my onc, who has never yet seen a scan that he thought showed cancer) concurred. Whenever I’m faced with something I really don’t want to do, I like to get a 2nd (or in this case 3rd) opinion. This one came from my beloved surgeon, who stepped up to the plate for me, and suggested I wait on anything too invasive until the next scan. Just one of many reasons why I love that guy. Sooo…next scan in September shows that sigmoid spot looks better, so probably not cancer, just normal weird intestine crap. BUT! Two new spots show up, one in the transverse colon (WTH? I could have sworn this stuff was all gone), with a high SUV but no physical structure, and one in the rectum that looks similar to the spot in the June scan. Y’all still with me here? Because I’m getting a little confused myself. Anyway, radiologist again suggests sigmoidoscopy, but this time Dr. Delusional says no. Not sure why. Maybe punishing me for turning down his suggestion for a fun day at the clinic last time? I might say yes if he’d at least buy me some flowers first. So I guess I’ll be staying in “watch and wait” mode for the time being, and be thankful for the fact that at the very least I’ve managed to go for 10 months without surgery, my personal record (WHERE IS MY TIARA? I AM STILL WAITING.).
PS Dr. Delusional asked me if I’ve been having any symptoms, like diarrhea. Hahaha! Only for the last two years! Think I should be concerned?
PPS Dr. Delusional has informed me that the intestines are “hollow tubes” (direct quote), for any of you who were unclear on that aspect of human anatomy.
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Comments

  • PhillieG
    PhillieG Member Posts: 4,866 Member
    #2
    I can’t quite decide which word to choose
    Maybe...

    HAPPY

  • maglets
    maglets Member Posts: 2,576 Member
    #3
    PhillieG said:

    I can’t quite decide which word to choose
    Maybe...

    HAPPY

    I chose funny
    I chose clever, witty and amusing and also happy cuz at least it isn't really really bad. thank you for that post. i was lol. Not to laugh at your/our/my/usins situation but i just thought you did a very nice job at laughing at your plight.

    I shall go onto ebay tonight , English Ebay i think and see if I can source suitable tiara.
    Would you like long gloves to go with that?

    all the very very best,
    keep it rollin

    mags

    oh and thanks for the anatomy update.....good to know
  • annalexandria
    annalexandria Member Posts: 2,571 Member
    #4
    PhillieG said:

    I can’t quite decide which word to choose
    Maybe...

    HAPPY

    I'll go with that one, Phil!
    I know my situation is a hell of a lot better than many of the alternatives.
  • annalexandria
    annalexandria Member Posts: 2,571 Member
    #5
    maglets said:

    I chose funny
    I chose clever, witty and amusing and also happy cuz at least it isn't really really bad. thank you for that post. i was lol. Not to laugh at your/our/my/usins situation but i just thought you did a very nice job at laughing at your plight.

    I shall go onto ebay tonight , English Ebay i think and see if I can source suitable tiara.
    Would you like long gloves to go with that?

    all the very very best,
    keep it rollin

    mags

    oh and thanks for the anatomy update.....good to know

    I'm ok with laughing people with me...
    or AT me. Either one involves laughter and that always improves the quality of life for the residents of Camp Cancer. And I'd like my gloves in black please...to match my sense of humor.
  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    #6
    Round and Round
    Wow that's a lot to comprehend on what is going on but glad that you are happy with the wait and see approach. Glad you have a doctor that you love and trust so much - it makes it so much easier when you feel you have someone on your side.

    Kim
  • Chelsea71
    Chelsea71 Member Posts: 1,169 Member
    #7
    Best laugh I've had all day.
    Best laugh I've had all day. Congratulations on your state of nedesque. "Watch and wait" is not so bad. Two years ago, I would have said I would never be able to live with such uncertainty. Isn't it amazing what you can get used to in life, when you have no choice.

    Take care,
    Chelsea
  • smokeyjoe
    smokeyjoe Member Posts: 1,425 Member
    #8
    Chelsea71 said:

    Best laugh I've had all day.
    Best laugh I've had all day. Congratulations on your state of nedesque. "Watch and wait" is not so bad. Two years ago, I would have said I would never be able to live with such uncertainty. Isn't it amazing what you can get used to in life, when you have no choice.

    Take care,
    Chelsea

    I wish scans could show
    I wish scans could show something difinitive.....hate it when doc's say they don't really know what the scan is showing. You put it in good perspective.....I'm having some scan anxiety as I have scans coming up next week. My oncologist brought up the fact I had scans on a specific date.....I shrugged my shoulders said I had it written down at home...I've gotten so I put these dates to the back of my mind, and he just had to bring it up!!!! Said he'd see me after the scans...ugggh. We'll see if the easy peasy Xeloda is going anything, if not I guess it's back to Folfiri.....I'm confused on whether or not I should book an appt. my surgeon said he wanted to see me in the fall......
  • Luckygirl2
    Luckygirl2 Member Posts: 308
    #9
    Dr. Delusional
    I'm thinking he may need a scan of his own up around his brain! :) Who would have thunk it..intestines being hollow! :) thank you for the post, your humor was refreshing and enjoyable..I must have my laughter at myself or I'd never get out of bed, I'm afraid! :)
  • annalexandria
    annalexandria Member Posts: 2,571 Member
    #10
    smokeyjoe said:

    I wish scans could show
    I wish scans could show something difinitive.....hate it when doc's say they don't really know what the scan is showing. You put it in good perspective.....I'm having some scan anxiety as I have scans coming up next week. My oncologist brought up the fact I had scans on a specific date.....I shrugged my shoulders said I had it written down at home...I've gotten so I put these dates to the back of my mind, and he just had to bring it up!!!! Said he'd see me after the scans...ugggh. We'll see if the easy peasy Xeloda is going anything, if not I guess it's back to Folfiri.....I'm confused on whether or not I should book an appt. my surgeon said he wanted to see me in the fall......

    I'll be thinking of you, Smokeyjoe-
    hoping that the Xeloda is doing its job. I've learned the hard way that bad side effects don't always mean that the treatment is working, and so despite how "easy" this chemo is, I'm betting on great results!
  • k44454445
    k44454445 Member Posts: 494
    #11
    wow
    oh my. you really have been thru it! loved your post!!!
    hugs
    judy
  • thxmiker
    thxmiker Member Posts: 1,278 Member
    #12
    Great Post!
    Time to find a
    Great Post!

    Time to find a new Onc! Mine was not perfect, but I felt always had my best interest in mind.

    NED is a dream which I lived for an entire two months. We all need to believe that we have the potential for cancer and to minimize those risks for the rest of our lives.

    Best Always, mike
  • herdizziness
    herdizziness Member Posts: 3,624 Member
    #13
    Ann
    Thanks for the humor in your situation, I can't wait to see your stand up comedy debut, I'll buy a ticket or two!!!
    Dr. Delusional sounds like quite the character, I especially enjoyed learning that our intestines are mere hollow tubes, go figure! The things you learn this late in life.
    Let's hope it's all nothing and you remain NEDesque!!!
    Thinking of you,
    Winter Marie
  • Maxiecat
    Maxiecat Member Posts: 544 Member
    #14
    Love the NEDesque...but be
    Love the NEDesque...but be careful of the pronunciation ...it almost sounds like you are a nudist.

    Alex
  • JayhawkDan
    JayhawkDan Member Posts: 205
    #15
    Lol
    I love wit and humor, and lady -- you've got it! Thx for the chuckle. And congrats!

    Dan
  • YoVita
    YoVita Member Posts: 590 Member
    #16
    Congratulations
    on your personal record. Love your attitude!
  • danker
    danker Member Posts: 1,276 Member
    #17
    annalexandria
    Just love your humor. Dr Delusional is the best. Get some script for LOMOTIL to con troll the diarrhea, It realy works!!
  • annalexandria
    annalexandria Member Posts: 2,571 Member
    #18
    danker said:

    annalexandria
    Just love your humor. Dr Delusional is the best. Get some script for LOMOTIL to con troll the diarrhea, It realy works!!

    Thanks, Danker...
    after much trial and error, that's what I'm using. Tried many other different things, none of which really worked. I liked being able to tell people I was using "tincture of opium", bringing to mind as it did turn-of-the-century dens of iniquity, but it didn't help. Lomotil may be boring, but it's effective!
  • janie1
    janie1 Member Posts: 753 Member
    #19
    annalexandria said:

    Thanks, Danker...
    after much trial and error, that's what I'm using. Tried many other different things, none of which really worked. I liked being able to tell people I was using "tincture of opium", bringing to mind as it did turn-of-the-century dens of iniquity, but it didn't help. Lomotil may be boring, but it's effective!

    Oh brother
    Funny doctors. Hang in there, Ann.
    I had a most frustrating day. I think I' ll watch a funny movie, cuz I'm tired of all the uncertainty.
    I hope you remain NED. Have some fun while you watch and wait.
    It's about time to store the boat for winter...eh? Are you a snow skier?
  • tachilders
    tachilders Member Posts: 313
    #20
    Keep up the great attitude
    Keep up the great attitude and humor!!! Personally, I would love to get NEDish, but don't know how likely that is in my case. Stage 4 with mets to liver, peritoneal cavity, lungs, and of course LN and colon. Still have all of my colon, but also have a transverse colostomy (on my left side, so pretty close to a descending colostomy). Not sure if I will ever get NED, but first CT scans (after 4-5 treatments) did show improvement (no new tumors, no growth, some shrinkage of up to 50% on some tumors). Just living a day at a time and hoping and praying for the best.

    Tedd
  • annalexandria
    annalexandria Member Posts: 2,571 Member
    #21
    janie1 said:

    Oh brother
    Funny doctors. Hang in there, Ann.
    I had a most frustrating day. I think I' ll watch a funny movie, cuz I'm tired of all the uncertainty.
    I hope you remain NED. Have some fun while you watch and wait.
    It's about time to store the boat for winter...eh? Are you a snow skier?

    Yup, time to winterize the boat...
    and myself, as well. I don't come out of hiding until spring. I used to ski, but have found I prefer sitting in the lodge by the fire with a healthy, non-alcoholic drink*.

    *Some aspects of this statement may not be 100% accurate.

    PS Hope your day is going better. I remember years ago watching an episode of Monty Python (the Twit race, to be exact, for any fans out there) after being dumped by some goofus guy. All depressed and everything, and watching that cheered me up so much, it was hard to stay down while laughing my head off. So I hope you found something that tickled your funny bone a bit!

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