Swelling just not going down

Really and truly, bless you all. Each story that I read her that echoes some truth from someone else's experience is this flicker of light in what is continuing to be just a really dark place. The cancer never got her down this much. But the pain in her arm is enough that I just want to find her some kind of relief.

She's been trying to walk around, but it's so incredibly humid in the area that she can't handle going outside (and I don't blame her. I don't want her out there either). She's trying to do things in the kitchen and around the house, but everything is so hard when she's wrapped down to her individual fingers. Even feeding the dog is a terrible struggle and she winds up frustrated and annoyed and near tears because she just can't seem to do anything. She wants to exercise her arm, but the most that I can get her to do is flex her fingers without her going into bouts of talking about how much it's hurting.

I've been big on hydration with her. It's the one thing I seem to be winning that battle. I'm glad that was a good choice. (That's been one thing I've done all along. Even when any part of this journey has seemed like it was spiraling out of control, I could always fill her water glass and tell her to drink.)

Tomorrow I'm going to the LE therapist to talk to them now that we have a diagnosis on her shoulder and to understand the preferred course of treatment and the level of priority on taking care of the different parts of this process. I'll talk to them about water therapy, too. I don't know how my mom's going to feel about it, but I would imagine that the water could be one place that she actually feels like herself again. Plus, she used to love swimming when she was young, so maybe just having that sensation for however brief of a time could be a good influence.

Binney, thanks for your explanation about the lymph fluid/inflammation. At least there is a reason that one is causing the other. It's so discouraging to go through these cycles, and even worse when nothing you're doing seems to get her any kind of relief.

She's taking her pain pill and looks like she's about to start resting comfortably enough for the night. I'll take it. At some point something is going to have to give.

All of this stinks. I'm sorry you've all experienced it, and wish you all the very, very best.

If it's something that works, I think it could be $100 well spent. With the exception when it comes to thousands for a pump, I'm more than happy to toss money into solutions.

She has two sleeves and two fingerless gloves right now, and we're working on getting a night sleeve, too. But the more options on the table (insurance-covered or not) the better...

So. It's been a bit of time, but we got the news last week that her swelling is actually due to cancer, not just lymphedema. She started getting small red bumps that were finally biopsied, resulting in a positive screen for cancer. Her disease is slow and degenerative, but at the moment it is feeling fast. She has swelling all through her body—her trunk, around her organs and lungs, and it started today in one of her legs. (The leg isn't too bad yet.)

I'm sitting beside her as she finally sleeps, listening to her breathe and wheeze and wishing that things were somehow different than they are. At least we have our answer as to why the swelling wouldn't go down; it turns out it was cancer and not just lymph fluid that keep multiplying.

I thought that cancer tended to make people thinner, but with my mom it is plumping her back up. All of the swelling is causing stress on her organs, and it's all gotten very, very complicated.

She's working on being enrolled in a clinical trial for an oral chemo and new hormone that should work together to give her some more time. Beyond that, we might try a few rounds of taxol (she was on taxotere already, so that might not work as effectively as they would like). The doctors insist that she still has life left in her. But not knowing what to do to make her more comfortable or to make this easier or to fix her is infuriating and heartbreaking.

Anyhow. Just logging in to update with sad news. Thank you all for your continued support. I'm going to allow her to sleep, but continue pondering if I should wake her to get her to a hospital. I just can't stand considering waking her when she's finally sleeping after an uncomfortable few days of her not sleeping.

I should also mention: she got the flexitouch pump and it was working WONDERS on her arm. But then we had to stop using it because she was diagnosed with chronic cancer--and the depth of that massage can push cancer cells into other organs at a faster rate, so it's off the table. But had this only been lymphedema, that would have worked wonders!

Things have been rough through August.

My mom was diagnosed with a recurrence a few weeks ago. It's not a large tumor, it's lots of small metastasis popping up all over her skin and in the pleural lining of her lung. She's had a pleurex installed and she's breathing a lot better than she was before. She got home from her hospital stay and her arm, which had been wrapped for the 6 nights she was in the hospital, opened up, so we had to deal with healing that. But now we are waiting for chemo to start next week.

The doctor had originally wanted to get her enrolled in a clinical trial for a new oral chemo, but she is unable to go through the testing necessary to be enrolled—And the cancer seems to be a bit more aggressive than we'd hoped.

Right now, she's really tired, sleeping a lot, and feeling uncomfortable. Nothing is really going to help until we can start fighting the disease. The oncologist was encouraging about the treatment, but we're increasingly anxious about it... Mostly because without doing anything, the cancer is visible on the skin and just keeps growing. It's gone from about 15 bumps along her scar to more than I can count wrapping the whole way around her body.

She doesn't have any tumors in any other organs, so no radiation, no surgery on the table; just a systemic approach to fending off the beast a bit longer. Maybe (hopefully, I pray) a lot longer).

I didn't think that lymphedema would lead to this.

Thank you all for your support through this. We're coming up on 4 years since the first diagnosis. I'd always hoped for 5. Not my will, though. Thy will. And it will be done. I just hope she doesn't suffer.