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Learning to Live an Uncertain Life

annalexandria's picture
Posts: 2573
Joined: Oct 2011

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.

PhillieG's picture
Posts: 4839
Joined: May 2005



maglets's picture
Posts: 2585
Joined: Jun 2006

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


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

annalexandria's picture
Posts: 2573
Joined: Oct 2011

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.

annalexandria's picture
Posts: 2573
Joined: Oct 2011

I know my situation is a hell of a lot better than many of the alternatives.

Annabelle41415's picture
Posts: 4975
Joined: Feb 2009

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.


Posts: 1170
Joined: Sep 2012

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,

Posts: 1428
Joined: Feb 2011

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......

annalexandria's picture
Posts: 2573
Joined: Oct 2011

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!

Posts: 308
Joined: Mar 2012

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! :)

k44454445's picture
Posts: 494
Joined: Jul 2012

oh my. you really have been thru it! loved your post!!!

thxmiker's picture
Posts: 1282
Joined: Oct 2010

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's picture
Posts: 3642
Joined: Apr 2010

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's picture
Posts: 544
Joined: Jul 2012

Love the NEDesque...but be careful of the pronunciation ...it almost sounds like you are a nudist.


JayhawkDan's picture
Posts: 206
Joined: Apr 2012

I love wit and humor, and lady -- you've got it! Thx for the chuckle. And congrats!


YoVita's picture
Posts: 590
Joined: Mar 2010

on your personal record. Love your attitude!

danker's picture
Posts: 1110
Joined: Apr 2012

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

annalexandria's picture
Posts: 2573
Joined: Oct 2011

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!

Posts: 753
Joined: Apr 2011

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?

annalexandria's picture
Posts: 2573
Joined: Oct 2011

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!

tachilders's picture
Posts: 313
Joined: Jun 2012

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.


annalexandria's picture
Posts: 2573
Joined: Oct 2011

I was not expected to live more than two years after diagnosis, and yet here I am, three years out and doing really pretty well. If the chemo works for you, surgery may very well be back on the table, and then long-term remission, or even a cure, could be in sight. So stay strong and keep hoping!

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