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. 
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.
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.
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.
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.
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…)
(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.
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.
Wow. That’s good to know, when the time comes. This cancer world - it really is its own little sub-world, isn’t it?
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.
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.
Maggie, another vote for medical marijuana. A co-worker took pot to cope with chemo 20 years ago. It worked really well. I know this because he forgot to take it one cycle, and that was a disaster. He missed an extra day of work due to the nausea, and came back with unpleasant stories. As far as my experience goes, pot is a performance enhancing drug for desk workers who need to think clearly but also need chemo.
(Yes, it was illegal at the time. His doctor recommended it anyway. And none of his friends or co-workers felt like calling the cops on him, somehow.:-))
This is a serious question.
How does your stool look like? In terms of shape, consistency, color, etc.
Thank you and good luck!
Maggie,
Each time I see your name it makes me smile, too.
Thank you for starting this thread, it is proving to be very informative and the discussion others are bringing useful.
Really appreciate your openness to responding to questions.
I wish you the best with this.
This seems like a weird question. Mine is different every day. It varries based on what I’ve eaten, and how much I’ve eaten, and where I am in my menstrual cycle, and whether I have a bug.
Um…pretty normal nowadays? After a lifetime of no real digestive issues, I’m now alternating between being blocked up and having the trots, but other than that it’s just…poop. No blood anymore, still smaller on average than before all this but much thicker than it was.
Yeah, weird question.
Wow well you can rest assured that you passed on valuable information- I’ve never heard of the “skinny poop” symptom and it’s something to watch for or if someone mentions to know to get checked out. Best to you in this journey, Maggie.
Sorry if that seems weird.
I have been experiencing blood in my stool every now and then for some time now. My stool also seems to be thinner than usual sometimes. I have already undergone a colonoscopy and the doctor only saw an internal hemorrhoid.
I am still kind of paranoid since the symptoms did not totally go away.
Bump?
I figured I’d post updates in this thread, that way people who want to follow along can do so, and those that don’t care (which is totally fine!) can avoid it.
Some good news lately:
They did a test for the tumor markers in my blood (CEA test), and the numbers are a LOT lower! Normal is under 2.5 ng/ml; my initial CEA test was in the 200’s (!). As of 10/2, I was at 35 ng/ml. So the chemo seems to be working!
Also, I was having some issues, feeling like something was going on in my right lung (the one with the tumor in it), so the pulmonologist sent me in for an x-ray. The tumor there was much, MUCH smaller than it had been! Wooo! Gooooo team lung!
Thirdly, they did a full genetic sequencing on me, trying to find out if the cancer is in fact genetic, which seemed very likely given the history of my father’s family. The tests came back with no harmful mutations found in the genes that they know can cause cancer. So that means my cousins are off the hook, as much as anyone is.
Per my chemo cycle, I had been scheduled to do IV chemo on Christmas Eve - that would have meant I was going to have a miserable holiday, since I’m still pretty much KO’d after my IV treatments. But the doctor said that since I’m doing so well, and since they’d want to give me a break for a bit right around that time, I should be able to skip that one. WOOOO!!!
That said - I’m still not making any long-term plans. And chemo is pretty hellacious - they changed the drugs so I’m not throwing up every hour and a half like I had been, but I still feel like crap for 3-4 days after the IV, and I’m getting some pretty nasty neuropathy in my fingers & toes.
More updates as News happens.
Hey, glad to hear things are looking up even though things are still shitty.
What have you learned about Kaiser policies, re:
– Medical MJ? Can you get a Rx for this from any Kaiser doctor?
– Assisted suicide, now that it’s legal? Does Kaiser allow this?
– Palliative care? Does Kaiser offer a good, strong, aggressive palliative care program?
Or would you have to go outside of Kaiser if you wanted any of these things?
ETA: Do you know if any of these things (or high-quality medical care) are equally available to Kaiser’s Medicare patients, compared to private-paying patients or patients with employer plans? I’m a Kaiser Medicare member, and my sense is that the care available to Medicare patients is a little bit superficial and perfunctory in some areas. But that’s just for basic routine care. I don’t know anything about how thorough their care is for patients with serious medical problems.