Posts by vividsailor7

Ashley Grant86 said:Hey everyone.
My mother is suffering from chronic lymphocytic leukemia, or CLL.
She’s been living with this diagnosis for two years now—maybe even longer, but we didn't know because there weren't any symptoms.
Ever since I found out what she was actually dealing with last year, I've thrown myself into everything I could find, trying to learn every detail and help her in any way possible...

The brutal reality is that there isn't a cure, and even her hematologist told me straight up that the outcome is already known.

It's been endless blood tests and waiting around for CT scans. For seven months last year, we were doing various treatments privately—either one-day outpatient stuff or home-based rounds with antibiotics...
As the treatments intensified, we hit a stage where she really needed to be hospitalized. But she refused. She’s incredibly active by nature; she can't stand being isolated. She loves talking to people, walking around, and she felt "good enough" to stay home. So, I told her fine, I won't force her, because I didn't think it would be right to push her like that.

We haven't gone anywhere since the spring—no tests, nothing. Things seemed okay, but deep down, I knew that eventually, those lymph nodes would start swelling again and things would take a turn for the worse because there's no cure.

Two days ago, in the middle of the night, she told me she was having abdominal pain. She doesn't feel well and is finally agreeing to go to the hospital, but she keeps saying "just a little longer until it cools down."
I can see things are going downhill, but I honestly don't know how to help.
I hate seeing her suffer, but I have to work, and I'm completely on my own here.

This disease is slowly killing me too. I can't find an exit strategy. I need to be by her side, yet I have to work, and managing both is draining every ounce of energy and money I have, not to mention everything else.

Does anyone here have experience with this? Is there any alternative to at least make her comfortable, or any advice on how to endure all this? This illness drags on forever and just exhausts everyone around it.

Any kind of help or advice to ease the burden would mean the world.

John Richardson6;35458856 said:In order! Thanks!
My hemoglobin is at 102; I probably lost a zero while typing that.
My left tonsil and lymph nodes have been constantly swollen for the last year (they shrink a bit, then swell right back up again), and I even had a lymph node biopsy.
I used to deal with tonsillitis all the time, but not anymore. However, I’ve noticed these little pits on my left tonsil where white plugs form—not like the usual stuff you see with strep throat, but hard plugs inside those holes that look like cottage cheese. They eventually come out and they smell absolutely terrible. My doctor told me it was totally normal, but because I kept pushing her, she finally did a throat swab, though they didn't find any bacteria.
She wouldn't even consider sending me for a tonsillectomy because, according to her, it's unnecessary.

I'm wondering, could this be related to all of this?
The report shows anemia, and I agree it’s most likely due to inflammation. If these throat issues have been dragging on this long, go talk to your primary care doctor about getting a referral to an ENT specialist. And just so you know, a swab doesn't always catch everything.