I’m going in for a colonoscopy next week. I’ve been horribly lax with it, given my family history (both my father and paternal grandfather died of it; my paternal aunt died of cancer too but I’m not sure what kind). If you have family history, insurance, in my experience, will pay for one every 5 years, but you have to make sure it’s coded as such.
I don’t know if I have the gene. I liken it a 50-50 shot, as nobody on my mother’s side ever had any kind of cancer. Still, it’s sort of weird realizing that I’m 5 years older than my dad was when he passed.
When I saw this post title my eyes widened because I remember very well that you’re so young to have to worry about something like this. And you’ve already been through so much medical crap and heartbreak from the fertility treatments. You truly have already had more than your share of this kind of crap. My heart goes out to you. Life really is not fair at times.
I do give you a lot of credit for being able to be so candid and realistic about what’s happening. Even though it is not fun to have to think about death, I think in some ways it is better when people can accept it when their cancer is not curable. Sometimes when people keep hoping against hope for a cure, I think they sometimes end up putting off doing the things that are important to them until it’s too late or not having important conversations with people while there is still time.
That being said, I always try to remember that NONE of us really know how long we have. Back when my mother was terminally ill with a nasty cancer, one of her nephews who was only in his 30s died very unexpectedly. I can remember my mother being genuinely shocked that she had outlived him. It was a wake up call to the reality that for all we know, one of us who is sitting here feeling bad for you for your diagnosis could hit by a bus tonight and end up dying much sooner than you. Life guarantees us nothing except this moment.
Questions:
Have you had a chance to look into if you are a candidate for any clinical trials that might offer some promising treatment? While obviously clinical trials are definitely not guaranteed to have good results, I think if I had a terminal cancer I would definitely give it a shot since you never know if you might be one of the lucky ones who does have a response to a novel treatment.
I know there are definitely people out there who do beat the odds and live much longer than expected even with nasty cancers, but if it does turn out that you die of this, what do you want your legacy to be? Any quotes or memories that you would want your loved ones to hold onto?
How would you want the Dope to remember you? I know without a doubt that many people in this community have been impacted by your presence here.
I’m sorry you have got this awful disease. I’ve lost both my parents to cancer. I just want to wish you good luck and that you will have many, many good days.
Maggie, I’m really sorry to hear about your cancer. But thank you for writing. A good friend died of colon cancer about a year ago. She was diagnosed after it had spread to her liver. Her cancer was also not something that could be removed, although they may have cut a few tumors out. She was about your age. Anyhow, thank you for answering some of the questions I couldn’t ask my friend.
She did have kids (teens), and she and her husband planned all sorts of stuff for the family to do together before she died. That actually worked out really well. She coordinated with her doctors to have chemo breaks when she went to the alps and stuff. If you have a bucket list, go and do it.
Also, she lived longer than anyone expected, and your life expectancy is longer than hers was, because the treatments GOT BETTER while she was being treated. She would take one type of chemo until it stopped working, and then shift to another. And some of those that worked for a whole didn’t exist when she was diagnosed. (or were still being tested.) I know there were a couple of early trials on-going when she died that her doctors had hoped she might live long enough to try. So don’t give up hope. But don’t give up the time you have, to horrible side-effects, either.
My main drugs are Oxalipilatin by IV, once every three weeks, plus Xeloda in pill form daily in a two weeks on/one week off format. I also get a couple other drugs by IV at the same time as the Oxalipilatin - two anti-nausea drugs (now), plus another called Avastin.
Husband and I joke that clearly Avastin was designed by pirates, and that one of my oral anti-nausea drugs, Ondancetron, is an answer to the question “On what planet was George Clinton born and Funk created?”
It absolutely is, and I’ve already written to Governor Brown asking him to sign it. Having an option like that - even if I didn’t use it - would be a great easing of my mind, especially since if I went through the proper channels there would be no risk of my loved ones facing prosecution for any assistance they might give me.
My feeling is this - if I own nothing else in this world, I own my own body. I get to say what it does, what it says, and when I am done with it I have the right to put it aside for whatever (if anything) comes after. This is something I’ve felt for a long time - I wrote essays on it in Jr. High debate class - and in my current situation I feel even stronger about it than I did before.
If nothing else, it’ll be a sort of “You can’t fire me! I QUIT!!!” situation, ya? The last little bit of control I can take over my own life is the end of it, and I want to be able to take that control.
Yeah, that’s the attitude Husband and I are taking - none of us know how long we’re going to be on this planet, but in my case we have a little better idea of the parameters. I could get hit by a bus tomorrow; I could have an amazing remission and live till I’m 90. But really - I’ll be fantastically lucky if I hit 55. And that’s just how it is.
I haven’t looked into any clinical trials yet - it’s only been 3 months since my diagnosis, and it seems like the standard drugs are doing OK. If/when they stop working, I will definitely see about that.
As far as my legacy - I really have never thought about it much. I’d like the world to be a slightly kinder, slightly more compassionate place in the places I’ve touched it. I’d like to be remembered fondly by those who knew me. If folks have a specific memory, I’d think it would be something like “Maggie laughing loudly at a horrible joke she just made, and making everyone else laugh too, even if they want to punch her because OMG that joke was HORRIBLE”. That wouldn’t be bad at all.
Maggie - I am so sorry to hear your news, and with all of the other posters, admire your bravery and mindset. I wish you continued strength on your journey - and thanks for being such a great Doper, as perfectly illustrated by this thread.
I’m am sorry to hear about your diagnosis. My prayers for you and your family.
We forget, or at least I sometimes forget, that there are real live people on the other side of the screen. May you continue to be for as long as possible.
Maggie, I love your attitude and admire your openness. I have a question, do you find yourself examining your past to see if there was anything in your lifestyle that may have contributed to your diagnosis? It could be anything from diet, to bathroom habits to emotional state, anything?
Well, I sure don’t know what to say. We really want you here, Maggie. This sucks. I’m your same age, and I doubt I could handle such news with any grace.
Honestly, because of the gene I’ve got (which I had a 50/50 chance of inheriting from my father), I had an 80% chance of getting colorectal or one of the related GYN cancers. I didn’t know that before the diagnosis, though.
The only thing I could have/should have done to make it any easier was go to the doctor when I first started having blood in my stool, instead of putting it off for months thinking it would go away and was probably no biggie. If I’d done that, they might have been able to catch it in an earlier stage - but maybe not. shrug
I have a friend whose husband has been battling this for at least 5+ years now. They’d gone up to Sloan-Kettering in NYC for surgery when it first cropped up - rectal vs colon if that makes any difference beyond the locale. They thought they got it all.
About 18 months later, when there was a gathering scheduled at her house, she emailed me and said “can it be your place instead? Husband is having an emergency colonoscopy tomorrow”. “Emergency colonoscopy” is a phrase you do NOT want to hear.
He’s currently going through a chemo regimen - I don’t know all the details, but it’s keeping things at bay well enough, though she gripes that one of the drugs makes him VERY talkative and drives her buggy.
Pencil-poo: I think I’d heard of that as an issue before but never thought about it. Makes sense though. I had that for a week or so when I had a nasty case of food poisoning, but it had a clear and urgent cause and went away when the food poisoning did.
Losing weight: yeah, unexplained weight loss - however welcome - is not the best of signs. Though like you I’d have probably ignored that. And blood on the toilet tissue? Heck, who doesn’t have annoying hemorrhoids at our age?
Here’s hoping your relatives do have the sense to listen to your warnings.
At your age, you wouldn’t have had a routine colonoscopy in time to stop this in its tracks. But I’ll take the opportunity to remind other readers that if you’re “that” age, DON’T DELAY IT. I had my screening colonoscopy at age 50 as an afterthought, and it turned up precancerous stuff. I’d have full-on colon cancer myself now if that hadn’t happened.
Can you go on medical retirement from work (if you were working and haven’t already done so)? No sense wasting time commuting / holding down an office chair if you can find a way to do something more enjoyable with your time now. My friend’s husband did finally do this after a year or so of trying to work and undergo treatment.
I could take a medical retirement - but honestly I can’t afford to. As I said, I’m the breadwinner for my little family, and I need to build and save my pension and conserve the savings I do have so Husband has something to live on after I’m gone.
For the same reason, I’m not planning on doing a lot of extravagant “bucket list” stuff. It seems foolish and irresponsible to waste that money on experiences for someone who’s gonna die soon, instead of saving it for the needs of those who will have to continue on for decades afterwards, y’know?
All newer stuff to me, but my chemo was a long time ago. I just hated the nausea, and back then you didn’t get the anti-nausea IV drugs, so you just lived in the bathroom for a while.
He is being very coy about it for the moment. I hope he signs it, although I hope that if he does, you never need to take advantage of the new law.
Thanks for answering. I’ll be thinking about you and wishing you the best of luck and the best of healing and the best of whatever it is that gets you through something like this.
