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Old 09-16-2015, 04:34 PM
Maggie the Ocelot is offline
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Ask the woman with stage 4 colon cancer! [update - Maggie has passed away]


Hey y'all!

Soooo at the beginning of June I was diagnosed with colon cancer, which had metastasized* into my lungs and possibly my liver.

Because it's spread so far (and mostly to my lungs), it's considered incurable, and I'm not currently considered a candidate for surgery. Basically they could cut the tumor out, but it would just grow back somewhere else since it's already taken the Lymphatic Express all the way up to Lungland.** They have given me some radiation treatment to shrink the main tumor (which was coming close to closing off my colon entirely. This would have been Bad.) and I'm also doing chemotherapy, so as to give me as much time as possible.

Some FAQ:

Q: Is this gonna kill you? If so, when?

A: Probably. The 50/50 (half the patients alive, half dead) for my particular kind of tumor is at about 3 years after diagnosis; the odds of living 5 years after is just under 1 in 8. It's possible that if the chemo works really really well they'll consider surgery to get the rest of it, but there's no guarantee (and, as stated above, no guarantee it wouldn't come back). Colon cancer likes to metastasize to the lungs and to the liver; unfortunately liver is much, much more operable than lungs are, so bad luck me.

Q: What's it like?

A: The cancer itself is, at this point, not horrible. The radiation and the chemotherapy, however, are pretty bad. Radiation made me so weak it was hard to get out of bed, and the chemo makes me throw up every hour and a half for 2-3 days. (Fortunately, they've found an anti-emetic that seems to be working, and just has me nauseated for the 2-3 days. Slightly better.)

Q: Do you have insurance?

A: Yes, thank goodness. I've got Kaiser HMO, which means I can't doctor-shop as much as I could otherwise - but it also means that I don't need to worry about whether a treatment or doctor or lab or pharmacy or whatever is in-network - if they prescribe it, it's authorized, and it's $15 a visit.

Q: Are you scared?

A: Hell yes! But not really? Kinda, most of the time? I'm worried about the people around me - my husband, mostly, but also my parents, my brother, my niece, my friends. Death is never pretty and rarely fun***, but in a way it's kind of a relief to know that I won't have to go through the whole "aging and watching your body fall apart over the course of 40-50 years" thing - instead it'll be accelerated, and over with faster. That's a weird thing to take comfort in, I know, but I've always been sort of cheerfully nihilistic. In the words of one of the great philosophers of our time:

Quote:
Originally posted by Eric Idle:

I mean - what have you got to lose?
You know, you come from nothing - you're going back to nothing.
What have you lost? Nothing!
Q: How old are you? Do you have kids?

A: I'll be 45 in December. No kids. We tried really hard for them, spent a lot of money on it, but no luck. I'm not sure if I'm glad, now, that we'd failed.

Q: Are you still working?

A: Yep! I'm lucky enough to have a job in civil service, so I've got not only decent insurance but a lot of sick/vacation days saved up and a union that will help me out with keeping my job as long as I can. Which is what I need to do, since I'm the sole support for Husband and I. I'm currently missing a bit of time for doctors' visits (not as frequent as when I was first diagnosed) and 2-3 days every 3 weeks for my chemo, but other than that I'm still chugging along like normal.

Q: Have you lost your hair?

A: No, and they tell me I probably won't, with my current chemo meds. My hair has definitely thinned a bit **** but is unlikely to go away. If it does, however, I plan to go to Little Tokyo and pick up all the cool blue, green, pink, etc cosplay wigs I can find, so I can match 'em to my outfits. Because reasons.

Q: You're ~~~~SO BRAVE!~~~~

A: First off, that's not a question. Second off, no, I'm really not. I'm just going along. I'm not particularly "Fighting this thing!" - I'm just doing my best to make the time I've got as enjoyable as possible. I have bad days, I have times I just want to cry and hold on to my sweetie forever, I have days when I'm so fucking tired of throwing up that I seriously wonder whether the chemo is even worth it. Eventually it probably won't be, and at that point I'll stop treatment or end things on my own. But it ain't bravery to just do what needs done, which is where I'm at right now. Do what needs done, ask for help when I need it, but don't ask nor accept it when I don't.*****


*This is a really hard word to say, and even harder to spell correctly. Go ahead, try.
**As my SAT prep class might have put it - The lymphatic system:Cancer::The 5 Freeway:California. A great way to get from one point to a much more distant point quickly and with a minimum of traffic.
***The only way I can see that death could be fun would be an opiate OD, and I'm not real sure about that one.
****As if it weren't thin enough already. I have fine, straight, light-colored hair and I NEED EVERY FOLLICLE I CAN GET to give me some semblance of volume.
*****Yes, despite being hella Californian, I am from Midwestern farmer stock. Does it show?
  #2  
Old 09-16-2015, 04:42 PM
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Don't sell yourself short on the bravery thing. Writing your post is itself an act of bravery.

Wishing you many, many good days.


mmm
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Old 09-16-2015, 05:06 PM
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I'm sorry for the diagnosis. Where there any signs beforehand?

I think you can only handle this in the best way for you. I will say that my uncle had colon cancer and they said he was weeks from death, but he pulled a miraculous recovery from. Don't discount that. I know that anecdotes don't equal evidence, but things could go your way. I'm hoping for the best possible outcome for you.

StG
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Old 09-16-2015, 05:14 PM
Maggie the Ocelot is offline
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Things totally could! And I would be very happy if they did!

I had a couple symptoms - I'd been losing weight (though I wasn't upset about that!), and I'd had some blood in my stool, which I knew in a sort of abstract way I should go in about, but it was probably just an internal hemorrhoid, everyone I knew who had had blood in their poop and freaked out about it it was an internal hemorrhoid, so no biggie, right? Except it wasn't.

Also - and this one, if I had known to be worried about it I would have gone straight in, except I'd never heard about it before: My poop was getting skinny. Like I had normal poop, and over several months the poop kept getting skinnier and skinnier, till it was as skinny as cat poop. By the time of the colonoscopy that diagnosed me, it was as skinny as a pencil, and the reason was because this big-ass tumor* was surrounding my bowel and hardly letting anything through. Like, they couldn't even get the colonoscopy scope past it, it was that big.

I have since learned that this almost always means a tumor. So: if you ignore every other symptom, don't ever ignore it if your poop starts getting skinny.


*which was also, by coincidence, a big ass-tumor

Last edited by Maggie the Ocelot; 09-16-2015 at 05:17 PM.
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Old 09-16-2015, 05:24 PM
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Quote:
Originally Posted by Maggie the Ocelot View Post
A: Yes, thank goodness. I've got Kaiser HMO, which means I can't doctor-shop as much as I could otherwise - but it also means that I don't need to worry about whether a treatment or doctor or lab or pharmacy or whatever is in-network - if they prescribe it, it's authorized, and it's $15 a visit.
My father passed away in 1998 after twelve years with leukemia, all of it on Kaiser HMO. While everyone's experiences with them must necessarily vary (I think they've been Pitted on this board before, but what major American health insurance provider hasn't?), my family's was uniformly excellent. He remarked to me once that if not for their outstanding prescription drug coverage - not even mentioning the coverage for services, just the chemo meds - we would have had to sell the house and move someplace smaller and cheaper.

Other than that, I have no questions. But I do sincerely wish for you to have many, many more happy, comfortable, and fulfilling days.
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Old 09-16-2015, 05:34 PM
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Ah, shit, {{{Maggie}}}. I'm so sorry this is happening to you. Sending you loads of good thoughts and hopes that you're the 1 in 8.
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Old 09-16-2015, 05:39 PM
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A good friend of mine just found out that he has the same thing. Colon cancer, now spread to his stomach and lungs. The tumors in his stomach are so big, you can feel them from the outside. It's terminal and inoperable. He will be getting his chemo port next week, and starting chemo. He's just a little older than you, 53.

I didn't know what to say to him, just like I don't know what to say to you. Cancer is such a shitty thing to have to deal with, and so unfair. You seem to have an extremely positive attitude, I'm told that's very important in treatment.

Good luck to you, and you never know, you might find yourself still kicking around 20 years from now. Sometimes people are cured, and there isn't any explanation. Why couldn't that be you?
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Old 09-16-2015, 05:47 PM
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That's awful. But thank you for sharing, and it's good you seem fairly upbeat.

My question: Have you tried/would you try marijuana to combat the nausea? Is medical mj an option in your state? I wouldn't let that stop me, but not everyone agrees on that.

Last edited by Rachellelogram; 09-16-2015 at 05:48 PM.
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Old 09-16-2015, 05:48 PM
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Ah hell Honey, that's pretty horrible. If it helps any - if they offer radiation to shrink the tumor, tell him to take it. Radiation kicked my ass hard, but it helped a lot in terms of shrinking the main tumor - I know this because my poop is regular width most of the time now, when before as I said it was almost completely blocked. Also because I very literally pooped out part of the tumor over the 2 weeks of radiation. Which was gross but kinda cool.

That reminds me, next time I have chemo I need to ask the doctor when they plan on giving me another scan to make sure this is working...
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Old 09-16-2015, 05:52 PM
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Originally Posted by Rachellelogram View Post
That's awful. But thank you for sharing, and it's good you seem fairly upbeat.

My question: Have you tried/would you try marijuana to combat the nausea? Is medical mj an option in your state? I wouldn't let that stop me, but not everyone agrees on that.
It is legal here, and I have a hell of a lot of friends who have been diagnosed with "anxiety" and have Green Cards for it.

I've been a bit reluctant to do so - which is partly due to some weird psychological crap on my part and partly because I honesttogoodness do not like being high. However I've been told that they have strains that you can get at the collectives that will help with the nausea without giving a high, so I might look into that.
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Old 09-16-2015, 06:07 PM
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Maggie, I don't know you, but I always admired your nickname and enjoy your posts. I understand what you are saying about doing what must be done (it was a lot like that for me when my husband died unexpectedly), but you are doing it with admirable courage and class.

We all know folks who have beat the odds. I wish you strength and painless longevity. And I offer hugs if you want them.

Thank you, too, for the skinny poop tip. I'll bet not one in a thousand knows about that.
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Old 09-16-2015, 06:11 PM
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Let me start with a rousing round of fuck cancer. Seen way too much of it in friends, families, and internet strangers.

I have a family history of colon cancer - not "direct", since it's a grandparent, but this still hits home. My grandfather died almost 30 years ago - hopefully the advances in medicine since then are enough to help you in some way!

Now, to the questions!
Do you have a family history of colon cancer?

Do you have anything cool (or mundane) on your bucket list that you want to accomplish while you're healthy enough?



ETA: Thanks for the comment about poop width. I never heard that before, but it makes sense.

Last edited by Digital is the new Analog; 09-16-2015 at 06:13 PM. Reason: Insert poop joke here.
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Old 09-16-2015, 06:26 PM
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Originally Posted by Digital is the new Analog View Post

Now, to the questions!
Do you have a family history of colon cancer?

Do you have anything cool (or mundane) on your bucket list that you want to accomplish while you're healthy enough?
Yeah, it turns out that this is probably genetic.

My paternal grandmother died in her thirties? from "bowel cancer" (this was back in the late '50s). Of her seven (!) children, three have had cancers of the lower body, two of them at a young age - Aunts Tina and Mar had various ovarian/uterine cancers in their early thirties, and my dad died of cancer in 2009 though he was in his sixties. I had thought it was lung cancer - he was a lifelong smoker - but it now seems likely that it was a colon cancer that had gone up into his lungs.* He died within 9 months of his diagnosis, but he didn't have insurance, so he probably let it go undiagnosed for longer than he could have.

The geneticist says that I probably got a bad gene from Grandma June that made this pretty much inevitable. Nowadays they can test for the gene, and if you have it they recommend getting yearly(!) colonoscopies starting at age 24 (!) because it's that likely you'll get cancer.

So there's another lesson - some genetic cancers can manifest as GYN cancers in some women, but as colorectal cancers in others/their siblings. I've let my relatives on my dad's side know this, but I have a feeling they're not going to listen. Of the aunts who probably have the gene, and who have a 50% chance of passing it on to their kids - one had 4 children, the other had two, but one of those two is a Quiverfull fundie** who has 9 kids so far. So there is potentially a lot more cancer floating out there.


*we weren't close, and his widow has passed away also, so I don't know for sure.
**I know, I know. He's the black sheep of the family. The rest are mostly hippies, he's just a weirdo.
  #14  
Old 09-16-2015, 06:41 PM
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All I can say is - holy shit, that sucks!
I wish you all the strength and luck in the world, Maggie.
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Old 09-16-2015, 07:09 PM
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Oh Maggie, I'm so sorry.

I wish you well on your journey.
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Old 09-16-2015, 07:13 PM
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Well, that just sucks. Really sucks. I love your outlook and wish you constantly fat poop.

Have you ever considered healing touch? I'm not a believer in astrology, etc., but but for some reason healing touch resonates with me something I'd try. People do give off measurable energy. Why not try to channel that?

Anyway, enough of that. Good luck to you, Maggie.
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Old 09-16-2015, 07:35 PM
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Nonononono!!

I just got done writing a message to someone about my friend who died last Christmas from colon cancer. I wanted to dedicate something to her. I HATE COLON CANCER!!!

She was an amazing woman, and fought such a fight. She really did a ton of cool stuff in the time between her diagnosis and her death. Her's was stage 4 when it was diagnosed and she was always up and down. I don't remember right now if she had 2 or 3 years after the diagnosis....

I wish the best for you. Whatever happens, I hope it is the best.

I don't have a question. You are brave.
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Old 09-16-2015, 07:44 PM
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I'm sorry to hear this, and I admire your attitude. I really think it makes a difference.

What kind of chemo are you getting?
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Old 09-16-2015, 07:59 PM
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Originally Posted by Maggie the Ocelot View Post
I'm worried about the people around me - my husband, mostly, but also my parents, my brother, my niece, my friends.
I'm glad you have good folks around you. I am wishing you well.
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Old 09-16-2015, 08:24 PM
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I'm really sorry to hear about your diagnosis, Maggie.

I have a question that I hope isn't too morbid. If it is, just ignore me or tell me to fuck off.

The California legislature passed an assisted suicide bill a few days ago, and it's currently sitting on the Governor's desk waiting for him to sign or veto. It seems unclear right now what Brown is going to do.

If it becomes apparent that your worst-case-scenario is upon you, that the end is inevitable, and you are in pain, is this something you would consider?

I ask partly because i've always thought i would do it under the right circumstances, but i think it's also one of those things that's very difficult to be certain about until you're actually faced with the choice.
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Old 09-16-2015, 08:30 PM
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Originally Posted by Maggie the Ocelot View Post
Yeah, it turns out that this is probably genetic.

My paternal grandmother died in her thirties? from "bowel cancer" (this was back in the late '50s). Of her seven (!) children, three have had cancers of the lower body, two of them at a young age - Aunts Tina and Mar had various ovarian/uterine cancers in their early thirties, and my dad died of cancer in 2009 though he was in his sixties. I had thought it was lung cancer - he was a lifelong smoker - but it now seems likely that it was a colon cancer that had gone up into his lungs.* He died within 9 months of his diagnosis, but he didn't have insurance, so he probably let it go undiagnosed for longer than he could have.

The geneticist says that I probably got a bad gene from Grandma June that made this pretty much inevitable. Nowadays they can test for the gene, and if you have it they recommend getting yearly(!) colonoscopies starting at age 24 (!) because it's that likely you'll get cancer.

So there's another lesson - some genetic cancers can manifest as GYN cancers in some women, but as colorectal cancers in others/their siblings. I've let my relatives on my dad's side know this, but I have a feeling they're not going to listen. Of the aunts who probably have the gene, and who have a 50% chance of passing it on to their kids - one had 4 children, the other had two, but one of those two is a Quiverfull fundie** who has 9 kids so far. So there is potentially a lot more cancer floating out there.
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.

(((Maggie)))
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Old 09-16-2015, 08:38 PM
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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.
  #23  
Old 09-16-2015, 09:16 PM
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I'm so sorry. I sincerely hope that you don't have too much discomfort with this terrible disease.
  #24  
Old 09-16-2015, 10:21 PM
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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.
  #25  
Old 09-16-2015, 10:51 PM
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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.

Best wishes.
  #26  
Old 09-16-2015, 11:34 PM
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I'm sorry to hear this, and I admire your attitude. I really think it makes a difference.

What kind of chemo are you getting?
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?"
  #27  
Old 09-16-2015, 11:42 PM
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I'm really sorry to hear about your diagnosis, Maggie.

I have a question that I hope isn't too morbid. If it is, just ignore me or tell me to fuck off.

The California legislature passed an assisted suicide bill a few days ago, and it's currently sitting on the Governor's desk waiting for him to sign or veto. It seems unclear right now what Brown is going to do.

If it becomes apparent that your worst-case-scenario is upon you, that the end is inevitable, and you are in pain, is this something you would consider?

I ask partly because i've always thought i would do it under the right circumstances, but i think it's also one of those things that's very difficult to be certain about until you're actually faced with the choice.
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.

Last edited by Maggie the Ocelot; 09-16-2015 at 11:43 PM.
  #28  
Old 09-16-2015, 11:53 PM
Maggie the Ocelot is offline
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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.
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.
  #29  
Old 09-17-2015, 06:02 AM
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I have no idea what to say to you Maggie, but wanted to post that I'd read this, am following, and cheering for you to fight the good fight.

Oh also...

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Originally Posted by Maggie the Ocelot View Post
Also because I very literally pooped out part of the tumor over the 2 weeks of radiation. Which was gross but kinda cool.
I loved this. Shit that cancer out!
  #30  
Old 09-17-2015, 06:34 AM
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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.
  #31  
Old 09-17-2015, 08:18 AM
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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.

Regards,
Shodan
  #32  
Old 09-17-2015, 08:35 AM
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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?
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Old 09-17-2015, 08:56 AM
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I do some work related to proton therapy. That might be something worth looking into.
  #34  
Old 09-17-2015, 09:27 AM
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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.
  #35  
Old 09-17-2015, 10:10 AM
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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?
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*

Last edited by Maggie the Ocelot; 09-17-2015 at 10:11 AM.
  #36  
Old 09-17-2015, 10:22 AM
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Originally Posted by Maggie the Ocelot View Post
....
**As my SAT prep class might have put it - The lymphatic system:Cancer::The 5 Freeway:California. A great way to get from one point to a much more distant point quickly and with a minimum of traffic.....
Not in Southern Califonia, I'd bet

More seriously. Shit .

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.

Last edited by Mama Zappa; 09-17-2015 at 10:24 AM.
  #37  
Old 09-17-2015, 10:44 AM
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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?
  #38  
Old 09-17-2015, 09:04 PM
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Thanks for writing and sharing this with us, Maggie. I'll be thinking about you.
  #39  
Old 09-18-2015, 07:37 AM
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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?"
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.

It's a rotten disease, and I'm sorry you have it.
  #40  
Old 09-18-2015, 09:19 AM
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It absolutely is, and I've already written to Governor Brown asking him to sign it.
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.
  #41  
Old 09-18-2015, 10:12 AM
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Maggie, you are one of the very first Dopers I ever had the pleasure of meeting in person, and my fondness for you has certainly not decreased over the years. I have already expressed my shock and sadness elsewhere, but please know that you and your husband continue to be in my thoughts.

And while I'm currently wishing I'd never had a reason to hear of Ondancetron, I very much appreciate you giving me a reason to smile about it.
  #42  
Old 09-18-2015, 10:53 AM
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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.

It's a rotten disease, and I'm sorry you have it.
Yeah, the first two cycles I only had one of the IV anti-nausea drugs, and it wore off about 18 hours after the chemo, so I was throwing up about every hour and a half for the next two days until it subsided enough for the Ondansetron to be effective.

I thought at first that I would just have to deal with it, but people kept telling me to talk to the oncology pharmacist, and that I did not in fact just have to deal with it. This most recent cycle I did so, and she added the second anti-nausea drug (the name of which eludes me), and it kept me from throwing up at all! I was still pretty queasy, but compared to how it was before it was SO MUCH BETTER.
  #43  
Old 09-18-2015, 10:55 AM
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No questions here but so sorry to hear your news. Hoping for a great response to chemo / radiation and sending good thoughts to you & yours.
  #44  
Old 09-18-2015, 03:31 PM
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Maggie, you may want to give the marijuana a try. I've spoken with people at the weed store and there are indeed strains that relieve pain and nausea but don't have the mental effects. Ondansetron/Zofran works, but it does have side effects, one of which is constipation. Are you on any pain meds? Opioids also cause constipation. I'd guess you're on preventative Miralax or a stool softener (sorry for ranging into possibly TMI territory) but just so you're aware. For this reason, weed may be an alternative.

I had a rare abdominal cancer last year that was suspected to be colon or ovarian and turned out to be neither. Out of all cancers diagnosed, it was a one in a million. I don't want to hijack your thread so I'll leave it at that except to add that thanks to living near a major medical center and creative insurance billing, I'm ok for the most part (knock wood). I didn't try weed as it hadn't occurred to any of us back when I needed it, but in more recent visits to the cancer center I've asked others about it. It's been nothing short of miraculous and it's ridiculous that it isn't legal in all 50 states. (don't get me started on "medical marijuana").

I hear you about the "brave" part. People definitely mean it kindly but we just do what we gotta do because what other choice is there? I'm ok with that, but when people talk about my "journey" I want to throttle them. So nobody say that to a person with cancer! It always feels like it's minimizing what I went through. "Journey" makes it sound like a vacation.

I also want to say that I have zero history of cancer in my family. Anywhere. I'm the first that we know. Just because it was in Maggie's genetics doesn't mean it won't happen to you. I was up to that point extremely healthy, never sick, not overweight, ate right, exercised. If something doesn't seem quite right, go to the doctor no matter how trivial it might seem. Better to over-react than under-react!

My very best to you, Maggie! I'm pulling for you! Thank you for letting me do a little ranting in your thread.

Last edited by Helena330; 09-18-2015 at 03:33 PM.
  #45  
Old 09-18-2015, 04:03 PM
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Yeah, my current plan is to hit up a Green Cross next time I see one - there aren't any in my particular suburb, but since my doctor's office is in Hollywood we pass like 6 between the office and the freeway. I'll talk to them about it. If it'll take away the nausea that's left over after the new IV drug, I'm all for it.
  #46  
Old 09-18-2015, 04:06 PM
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Maggie: I don't have any questions for you, and I don't know if you care you are in my thoughts.

But I just have to tell you that I've always loved your username. It makes me smile every time I see it. (Well, not so much under the circumstances. But still...)
  #47  
Old 09-18-2015, 06:02 PM
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... oncology pharmacist ...
(stage IV melanoma patient here; lymph node & lung mets)


There are all sorts of unexpected medical specialties out there helping with all sorts of issues. A pain management specialist is a likely addition to the team at some point. A medical social worker may be able to help with regard to arranging provision for your husband.

When you are mentally ready for it, you can talk to your oncologist about end-of-life care. Hospice (either in-patient or at home) is terrifically supportive, both of the patient and of her close friends and family.

Quote:
My hair has definitely thinned a bit ... I have fine, straight, light-colored hair and I NEED EVERY FOLLICLE I CAN GET to give me some semblance of volume.
The American Cancer Society has a program called "Look Good, Feel Better". They give a half-day class on hair, skin care, and make-up during treatment, complete with a goodie bag with about $100 worth of stuff.

There is also a specialty training for salon/spa staff as an "oncology esthetician", focusing on how cancer treatment interacts with various services.
  #48  
Old 09-18-2015, 06:21 PM
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Wow. That's good to know, when the time comes. This cancer world - it really is its own little sub-world, isn't it?
  #49  
Old 09-18-2015, 07:32 PM
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Not THAT little, unfortunately. Stay tough, keep posting, and if you get a little loopy from the drugs we'll pit anyone that complains. And I hope Jerry Brown allows you a legal Plan Z. We all need a Plan Z, if only to comfort us with the knowledge that we can take it.

Last edited by dropzone; 09-18-2015 at 07:33 PM.
  #50  
Old 09-19-2015, 12:09 AM
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Oh no, I am so sorry and wish you the best in your fight. And thank you so much for starting this thread. This is giving me the kick in the pants I need to get my colonoscopy scheduled. (Dad died of colon cancer.)

Hospice is truly a wonderful service when you need it. There is also palliative care, which is much like hospice but you can undergo treatments to a much greater extent than you do under hospice. Both are terrific programs designed to make you as comfortable as possible.
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