Ask the woman with stage 4 colon cancer! [update - Maggie has passed away]

Miscellaneous and Personal Stuff I Must Share
1

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:

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 :mad:**** 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. :smiley:

Q: You’re SO BRAVE!

A: First off, that’s not a question. :smack: 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

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

3

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

4

Things totally could! And I would be very happy if they did! :smiley:

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

5

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.

6

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.

7

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?

8

That’s awful. :frowning: 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.

9

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…

10

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.

11

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.

12

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.

13

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. :frowning:
*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

All I can say is - holy shit, that sucks!
I wish you all the strength and luck in the world, Maggie.

15

Oh Maggie, I’m so sorry.

I wish you well on your journey. :frowning:

16

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.

17

Nonononono!! :frowning:

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.

18

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?

19

I’m glad you have good folks around you. I am wishing you well.

20

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. :slight_smile:

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.