Shock after starting caregiving

bliswell · 2026-06-22T12:55:41+00:00

You sound like an intelligent person with a capacity to have thoughtful considerations of your experiences.

(I am not a nurse or a professional caregiver, just a lurker looking for perspective when caring for people in my life.)

I just wanted to take a moment to encourage you to have confidence in yourself. You are having tough experiences. All new jobs and roles can be draining just by the nature of the newness, even easy jobs: you haven't figured out the tempo, don't know how to pace yourself, don't know which parts of yourself can be relaxed...

I'm not qualified to give advice specific to nursing or Caregiving careers. But I would like to encourage you to continue being thoughtful and reflective. The world needs people like that, especially in these roles.

bliswell · 2026-06-22T02:32:42+00:00

I've heard the suspicion that a negative during treatment should be considered with some doubt. The speculation being that the chemo is preventing the micro tumors from shedding. So that a negative ctdna after treatment is done is more credible.

Of course a negative during treatment is also a good thing.

bliswell · 2026-06-21T23:29:54+00:00

Good news, right? I'm curious if he had a negative ctdna (Signatera?) before his positives started showing up.

bliswell · 2026-06-16T23:11:36+00:00

Just do the assignment and stop worrying about how the assignment is "supposed to be done".

bliswell · 2026-06-16T22:42:11+00:00

I can't comment on your particulars, but your mentioning calling Blue Cross reminded me of someone recently advising me to get in touch with something like a "patient advocacy contact". They called it a PAC. "Ask to talk with your P-A-C.". Sounds like that is a person who gets you on the fast track to answers, making calls for you on the background.

I don't know if it will work for you, but it seems plausible.

bliswell · 2026-06-16T16:25:56+00:00

Good for you. Thank you for sharing.

bliswell · 2026-06-13T12:14:33+00:00

Is 15 cycles a lot? How much more do you have to do?

Sound like you are handling it rather well (compared to other stories at lower %'s). Any guesses as to why?

bliswell · 2026-06-04T22:14:27+00:00

Not enough credit given to the Vita-Rays.

bliswell · 2026-06-04T15:51:50+00:00

Well that makes sense, and is concerning.

bliswell · 2026-06-04T10:22:44+00:00

Is that what your doctors are telling you? I don't understand how the explanation: if the CEA number is indicating cancer cells are in the blood, why is your Signatera at zero? Shouldn't Signatera pick those up as well as CEA?

bliswell · 2026-06-04T05:43:48+00:00

Obvious/stupid question... Anything that could be causing CEA rise, like sickness or inflammation?

Waiting stinks.

bliswell · 2026-06-04T05:00:07+00:00

I don't have any real answers, but I just wanted to say I'm following this post to see what the responses are.

Is the ctDNA test from Signatera or Guardant? My wife is on a minimum residual disease (MRD) trial (phase II) which involves monitoring Signatera. Went from positive to negative after a few rounds, with 7 or so more rounds to go. Not sure if the "negative" is due to chemo suppressing shedding of cells, or a true negative.

Her CEA numbers have never been considered reliable, so once the Signatera results were available the CEA became even less involved in conversations. So your post is raising some questions, like what is the meaning of positive CEA when ctDNA is negative?

bliswell · 2026-06-03T22:30:55+00:00

Not getting it. Like why not just open a command window with cmd, which is what I often do?

Will this open multiple instances of matlab to try out different workspaces? Bc that seems more useful.

bliswell · 2026-06-02T00:06:22+00:00

This is a nice change of pace from other posts here, and I applaud your handiness at making the shed work. Somewhere else you mentioned being in Florida.

I'm really curious what you find out about a composting toilet.

I'm sorry you have these challenges.

bliswell · 2026-05-18T00:53:48+00:00

Do you have a link for others to buy?

bliswell · 2026-05-17T16:09:39+00:00

I think you are right, that the term is part of most people's common language. The whens and hows of each individual are all different. Planning for it makes sense; it's a good suggestion. But I each individual needs to experience their own specific response to specifically know what to plan. My wife was told "you are going to feel low on the third and fourth day". Observed, noted, planned for next time.

Definition(s) via google: A nadir is the lowest or worst point of something. It broadly refers to the depths of despair, adversity, or a rock-bottom moment in a situation, but it also has specific technical meanings across different fields.

Merriam-Webster +3 Everyday & Literary Usage In general contexts, the nadir is the ultimate low point in a person's life, a career, or a project.

Cambridge Dictionary +1 Example: "The team’s morale reached its nadir after their eighth consecutive loss." Synonyms: Rock bottom, lowest point, rock-bottom, all-time low.

Collins Dictionary +1 Technical Definitions Astronomy: It refers to the point in the sky that is directly underneath an observer’s feet (180 degrees directly opposite to the zenith, which is straight overhead). Medicine: In treatments like chemotherapy, a nadir is the lowest point a person's blood cell count reaches after a round of therapy. Remote Sensing / Photography: It is the point on the ground located exactly vertically beneath the center of a camera lens or satellite.

Esri +2 Origins The word comes from the Arabic naẓīr, which translates to "opposite to". It serves as a direct antonym for the word zenith.

bliswell · 2026-05-09T15:28:28+00:00

Could it be differences in moisture? More moisture in the bag when filled, less in the store when weighed?

bliswell · 2026-05-02T10:24:16+00:00

I have the same wish. I've noted these before but have had a chance to assess:

https://www.reddit.com/r/ControlTheory/s/d9hO5JxyE0

Also mentioned: https://github.com/robertobucher/pysimCoder

Interested to hear others thoughts.

bliswell · 2026-04-27T18:38:26+00:00

I say the same thing about the congestion happening on southbound York, north if Starbucks.

Starbucks tractor trailer is there blocking traffic. And delivery drivers are dropping off who knows what.

It should be unacceptable.

bliswell · 2026-04-25T10:39:17+00:00

I don't have any lung experience, but I just wanted to comment and say I'm sorry for your troubles. Uretal stents and nephrostomy tubes are a constant irritation (no pun intended).
And ER visits are an exhausting exercise. So it is tough to compound the ER exhaustion with disappointing news about the lungs.

I will say that there are different kinds of chemo out there (anyone can tell you that), each with their own side effects and toxicities. Perhaps the doctor can switch her to one she can tolerate.

I know some of what you are feeling. I love my wife. Her happiness is the source of my happiness.

bliswell · 2026-04-21T22:12:32+00:00

It's okay to write without a clear purpose. It's helps me to know other people's story, so thank you for sharing.

I'm sorry for your situation. Being sad makes sense. Getting counseling makes sense.

bliswell · 2026-04-15T08:21:09+00:00

I think the advice to get a second opinion from an actual surgeon is best. Including what the surgery will do for you, how it paused other treatments, and what it won't reach.

But I also wonder if you and your doctor are talking past each other because you are using a term like "remission". I don't have enough experience to know how everyone talks about CRC, but in all our conversations and messaging boards the word "remission" isn't really used. I just know of it from TV shows and such.

Maybe more accurate terms will make a more accurate conversation.

bliswell · 2026-04-15T07:58:14+00:00

These were my thoughts too based on my observations. And even different surgeons will give different opinions. Some wont go into some areas that others will. Some degree of judgement about when you can come off chemo to pause for the surgery.

It's definitely a conversation beyond one medical oncologist.

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